Saving Little Hearts

2012-01-10T14:44:00.001-05:00

2011-09-12T13:51:00.001-04:00

To submit a photo for the 2012 CHD Calendar please follow all of the following guidelines to ensure that your photo is received properly.

1. Make sure the file is the name of the person with the chd in the following format First Name_Last Name (i.e. John_Smith.jpg)
2. Photos must be in a JPG format and no larger than four (4) megabytes (MB).
3. Email only ONE (1) photo per CHD person to karin@savinglittlehearts.com.
4. Include the person with the CHD's name, heart defect(s),birth date, death date (if applicable), parent or guardian name, address and phone number
5. Photo must be received by October 1, 2011 - late photos will not be put in the calendar.

By submitting the photo you agree to the following:

Terms of Service - For consideration received (whether or not in money or money’s worth), the sufficiency of which is acknowledged, I hereby grant to Saving Little Hearts, Inc. (“SLH”), the absolute and irrevocable right and permission, in respect of the photographic images that they have taken of me or in which I may be included with others, or an image that I have provided (collectively, the “Images”), to copyright the same in their name or otherwise as SLH, in its sole discretion, deems proper; to use, reuse, publish and republish the Images in whole or in part, individually or in conjunction with other images, and in conjunction with any other printed matter, in any and all media now or hereafter known, and for any purpose whatsoever, for illustration, marketing, promotion, art, advertising including internet advertising, and trade, or any other purpose whatsoever; and to use my name in connection therewith if SLH, in its sole discretion, deems proper.

I hereby release and discharge Saving Little Hearts, Inc. from any and all claims and demands arising out of or in connection with SLH’s use of the Images, including without limitation any and all claims for libel or invasion of privacy.

This authorization and release shall also inure in perpetuity to the benefit of the directors, officers, heirs, legal representatives, licensees, and assigns of Saving Little Hearts, Inc., as well as to the benefit of any publication in which the Images (or any of them) may appear.

I hereby warrant that I am of at least Eighteen (18) years of age (or if a minor a guardian’s signature is also affixed) and that I have read the above authorization, release and agreement, and that I am fully familiar with the contents thereof. I further warrant that I am the sole owner of any Image provided by me and, if any Image provided by me is copyrighted, I am and remain the copyright holder of such Image and I assign and have the right to assign permission to Saving Little Hearts, Inc. to use the said Images. This release shall be binding upon me, my heirs, legal representatives and my assigns.

2011-02-10T09:57:00.003-05:00

I’m so excited to let you know about a few things going on. Even though these are not SLH sponsored events they are for all CHD families and I would love to see you at both events if at all possible. One event is Tuesday am and one is Tuesday afternoon. I know this is a work day so please just attend what you can. Best wishes!

Karin Coulter

Congenital Heart Defect Awareness Day 2011

• Hosts: Kara Adams, Susan Waggoner, Chasity Crouch

• Phone: 615-372-9374

• When: Tuesday, February 15 at 10:00 AM

• Where: Monroe Carell Jr Children's Hospital at Vanderbilt2nd Floor Theatre Nashville, TN 37232

Pulse Oximetry Screening of Newborns

SB-65 Relative to Screening of Newborns will be on the Health Calendar next week. The committee meets on Wednesday, February 16, in Committee Rm 12 at 11:00am CST. (Capitol Bldg in Nashville TN). Everyone is invited to attend. Please help spread the word. Thanks! http://www.facebook.com/event.php?eid=111073808967232

2010-11-15T18:09:00.001-05:00

Saving Little Hearts Cruise
Carnival Freedom
May 29, 2010

Come enjoy the laidback vibes of Key West, Swim with Sting Rays in Grand Cayman, Climb Dunns River Falls in Jamaica and Enjoy A Fun Filled Day At Sea With Water Slides, Family Activities, or, sit back in the Adult Only area for some much needed quiet time All While Helping The Families Of Saving Little Hearts

Current Price List:
Price includes all taxes and fees, and gratuities per person 1st/2nd guest
Includes: Six Breakfasts/Lunches/Dinners, Camp Carnival, Las Vegas Shows,
Comedy Club, Outdoor Movies/Concerts, 24 HR Room Service, Mini Golf/Water Slides, Family Activities, 24 hr Ice Cream,
*Welcome Aboard Toast ~ $25 Shipboard Credit ~ Cocktail Party|
Cruise Planners Gift-TBA

Inside Stateroom/Deck 4/Midship Cabins
Fun Select Group $789.02 per person
Ocean View/Deck 4/Midship Cabins
Fun Select Group $869.02 per person
Balcony/Deck 6/Midship Cabins
Fun Select Group $989.02 per person
Balcony/Deck 7/Midship Cabins
Fun Select Group $1009.02 per person

Prices reflects $60 per cabin fundraiser amount, which will be matched by Carnival Cruise Lines. Please inform Travel Agent if you are a past guest of Carnival Cruise Lines, or, if you are part of the Military past or present as other discounts may apply.

Insurance will be quoted at time of reservation.

Airfare: You can reserve your airfare straight from this web site: www.gottacruise.com

Booking Air On Your Own? Flight Guidelines for the Latest
Airport Arrivals and Earliest Return Flights:
Latest Flight Arrival:
Arrivals into the Ft. Lauderdale Airport: 2:30pm
Earliest Flight Departures:
Earliest departures out of the Ft. Lauderdale Airport: 11:30am

To assure you arrive to the ship on time, it is highly recommended that you fly out the night prior to the cruise.
Special Pre-Night Group Pricing at the Embassy Suites
Saturday, May 28, 2011
$155.50
Price includes baggage handling fees, taxes, transfers from hotel to pier.
Hotel has free cocktail hour from 5:30-7:30pm and includes a Made To Order breakfast

Price does not include taxi from airport to Embassy Suites (approximately $12 plus tip)

Transfers for after the cruise can be arranged by Cruise Planners, or a quick taxi from pier to airport for around $14 (taxi available after cruise at the pier)

Please be advised that any special amenities or events associated with this cruise are for guests booked through Cruise Planners/GottaCruise under Saving Little Hearts Cruise~

I cannot wait to Welcome You On Board!

Tammy Matson, MCC
Cruise Planners, American Express
Email: Tammy@gottacruise.com
Contact: 1-800-932-8114
970-407-8134

Web Site: www.gottacruise.com

2010-09-21T08:00:00.000-04:00

Federal Recommendation Regarding CHD Screening of Newborns

In a ground-breaking recommendation, The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), a government agency reporting to Health and Human Services Secretary Sebelius, clearly stated that there is a need to screen newborns for the most severe and life-threatening type of congenital heart defects-critical congenital cyanotic heart disease. The committee recommended that screening for severe CHD be added to the traditional newborn screening panel, however, noted that additional work needs to be done in a timely manner. These acknowledged efforts involve The National Institutes of Health (NIH) to conduct research to look at the entire screening process; The Centers for Disease Control and Prevention (CDC) to complete surveillance to look at outcomes; and, The Health Resources and Services Administration (HRSA) to begin looking at standards. There is also a recommendation for collaboration between public health and health care professional organizations and families to develop appropriate education and training materials. For complete text of the recommendations as presented by HRSA, please see below.

As part of the National Congenital Heart Coalition and the Congenital Heart Public Health Consortium, we look forward to partnering with the public health agencies and health care professionals as the details of this plan are sorted out. We will continue to provide you with updated and accurate information along the way.

______________________________________________

From the Health Resources & Services Administration (HRSA)/Maternal & Child Health Bureau re: Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) recommendation to add critical congenital cyanotic heart disease (CCCHD) to the uniform newborn screening panel.

Although there are recognizable evidence gaps, there are compelling reasons for recommending screening newborns for critical congenital cyanotic heart disease (CCCHD). SACHDNC recommends the addition of screening for CCCHD to the recommended uniform screening panel with the understanding that the following activities will also take place in a timely manner: The National Institutes of Health shall fund research activities to determine the relationships among the screening technology, diagnostic processes, care provided, and the health outcomes of affected newborns with CCCHD as a result of prospective newborn screening; The Centers for Disease Control and Prevention shall fund surveillance activities to monitor disease link to infant mortality and other health outcomes; The Health Resources and Services Administration shall guide the development of screening standards and infrastructure needed for the implementation of a public health approach to point of service screening for CCCHD; The Health Resources and Services Administration shall fund the development of, in collaboration with public health and health care professional organizations and families, appropriate education and training materials for families and public health and health care professionals relevant to the screening and treatment of CCCHD.

*reprinted with permission from Mended Little Hearts. Saving Little Hearts and Mended Little Hearts work hand in hand to provide the best services possible to the congenital heart community.

2010-08-03T20:25:00.004-04:00

To submit a photo for the 2011 CHD Calendar please follow all of the following guidelines to ensure that your photo is received properly.

1. Make sure the file is the name of the person with the chd in the following format First Name_Last Name (i.e. John_Smith.jpg)
2. Photos must be in a JPG format and no larger than four (4) megabytes (MB).
3. Email only ONE (1) photo per CHD person to graphics@z11communications.com.

4. Include the person with the CHD's name, heart defect(s),birth date, death date (if applicable), parent or guardian name, address and phone number
5. Photo must be received by August 31, 2010 - late photos will not be put in the calendar.

By submitting the photo you agree to the following:

Terms of Service - For consideration received (whether or not in money or money’s worth), the sufficiency of which is acknowledged, I hereby grant to Saving Little Hearts, Inc. (“SLH”), the absolute and irrevocable right and permission, in respect of the photographic images that they have taken of me or in which I may be included with others, or an image that I have provided (collectively, the “Images”), to copyright the same in their name or otherwise as SLH, in its sole discretion, deems proper; to use, reuse, publish and republish the Images in whole or in part, individually or in conjunction with other images, and in conjunction with any other printed matter, in any and all media now or hereafter known, and for any purpose whatsoever, for illustration, marketing, promotion, art, advertising including internet advertising, and trade, or any other purpose whatsoever; and to use my name in connection therewith if SLH, in its sole discretion, deems proper.

I hereby release and discharge Saving Little Hearts, Inc. from any and all claims and demands arising out of or in connection with SLH’s use of the Images, including without limitation any and all claims for libel or invasion of privacy.

This authorization and release shall also inure in perpetuity to the benefit of the directors, officers, heirs, legal representatives, licensees, and assigns of Saving Little Hearts, Inc., as well as to the benefit of any publication in which the Images (or any of them) may appear.

I hereby warrant that I am of at least Eighteen (18) years of age (or if a minor a guardian’s signature is also affixed) and that I have read the above authorization, release and agreement, and that I am fully familiar with the contents thereof. I further warrant that I am the sole owner of any Image provided by me and, if any Image provided by me is copyrighted, I am and remain the copyright holder of such Image and I assign and have the right to assign permission to Saving Little Hearts, Inc. to use the said Images. This release shall be binding upon me, my heirs, legal representatives and my assigns.

2010-06-29T23:43:00.002-04:00

With your help Saving Little Hearts could win funding from Chase Bank to fund surgery care packages for children undergoing open heart surgery. Your vote and support are needed today!

2010-06-08T10:45:00.003-04:00

2011 CHD Calendar Cover Model Contest Has Begun

To help raise money for the Saving Little Hearts Surgery Care Package Program we are holding a contest to select the 2011 CHD Calendar Cover Model. The contest has begun and will go until August. Anyone (yes angels are included) born with a congenital heart defect anywhere in the world can enter. Children with acquired heart disease are also eligible. All you have to do is go to http://www.firstgiving.com/savinglittlehearts and set up a fundraising page for the person you want to be on the cover. Then send the link to everyone you know, post it to twitter, facebook, myspace and any other pages you are on. The person with the most money collected at the end of the contest will be our cover model. In addition to being on the cover an extra special surprise will be given to the winner. Good luck to everyone! We can't wait to see who the lucky winner will be.

2010-05-29T09:04:00.003-04:00

Saving Little Hearts is doing something new this year to find a cover model for our next calendar. Anyone, even angels, anywhere in the world can be on the cover. The only criteria is that they were born with a heart defect. Check back in a few days to find out the details how your favorite CHDer can be on the cover.

2010-04-13T09:04:00.001-04:00

2010-04-06T13:07:00.001-04:00

Starting today, April 6, through April 11, 2010—you can get 50% off the Insertion Fee for your Auction-style and Fixed Price listings when you donate part of your final sale price to Saving Little Hearts through eBay Giving Works. Donate as little as 10% (or $1 if 10% of your final sale price is less than $1). If your item sells, you’ll get back part of your Final Value fee, too, per our charity listing fee credit policy. eBay will be encouraging buyers to look for eBay Giving Works sellers with a special coupon coming in the next week. Some categories and types of listings are excluded. Please see details about this special promotion.

2010-03-30T11:46:00.001-04:00

As you are cleaning out yours and your children’s closets preparing for a new season please consider donating your unneeded items to Saving Little Hearts. Please spread the word around and let's see if we can't get some donations rolling in. I'll gladly do pick-ups for Knoxville, TN. Anything else can be shipped to Saving Little Hearts. If you need to ship things to us please email me at karin@savinglittlehearts.com and I can give you those details. Thanks so much for everyone's help!!

2010-03-26T16:59:00.000-04:00

National Congenital Heart Lobby Day and Vision 2020 are just a few weeks away! April 22nd will be here before you know it.

The deadline for hotel reservations at the Phoenix Park Hotel is rapidly approaching, and there is some concern that the rooms for Wednesday night will sell out, while we have plenty of rooms if you are staying for Thursday and Friday. In order to help plan your trip to Washington, DC we are supplying a list of additional local hotels (below) for your consideration when you are booking your accommodation. All of the hotels listed are close to the Phoenix Park Hotel, or a Metro ride (Red Line) away from Union Station, which is across the street from the Phoenix Park.

The events of Lobby Day and Vision 2020 will still take place in the conference rooms at the Phoenix Park Hotel. Once you arrive for the day, there will be no need for additional traveling, with the exception of our legislative visits - I do want to remind you that there will be a fair amount of walking for these visits so wear comfortable shoes.

Feel free to email AEspe@achaheart.org or call the ACHA office at 215-849-1260 with any additional questions or concerns.

Sincerely,
Anna Espe

Register for Lobby Day https://www.achaheart.org/getinvolved/lobbyday2010.php
Register for Vision 2020 http://www.achaheart.org/advocacy/V2020_Forum2010.php

Alternate Hotels in Washington, DC

Courtyard Washington, DC/U.S. Capitol--$269/night
1325 2nd Street NE Washington, DC • (202) 898-4000

The Georgetown Inn-$229/night
1310 Wisconsin Avenue, Washington, DC • (888) 587-2388
One block from the Foggy Bottom Metro Station on the Red Line

Capitol Hill Suites-- $349/night
200 C Street Southeast Washington, DC • (202) 543-6000

Washington Court Hotel -$240/night
525 New Jersey Avenue, NW Washington DC • (202)628-2100
2 blocks from Union Station

Holiday Inn Express National Arboretum--$216/night
1917 Bladensburg Road Northeast Washington, DC • (202) 266-9000
Free Shuttle to Union Station

The Fairfax at Embassy Row-$149/night
2100 Massachusetts Avenue Northwest, Washington, DC • (202) 293-2100
One block from the Dupont Circle Metro Station on the Red Line

Days Inn Washington DC-$129/night
4400 Connecticut Avenue Northwest, Washington, DC • (202) 244-5600
One block from the Van Ness Metro Station on the Red Line

Comfort Inn & Suites near Union Station-$258/night
1600 New York Ave NE, Washington DC • (202) 832-3200
No immediately accessible public transit

Red Roof Inn--$133/night
500 H Street Northwest Washington, DC • (202) 289-5959
One block from the Gallery Pl-Chinatown Station on the Red Line

Kalorama Guest HouseAddress:
1854 Mintwood Place Northwest Washington, DC • (202) 667-6369
One block from the Dupont Circle Metro Station on the Red Line

2010-03-08T15:53:00.006-05:00

WIN IT: I have 5 Saving Little Hearts Ronnie Raccoons to giveaway!

MANDATORY ENTRY: Head on over to www.savinglittlehearts.com and leave a comment telling me something you learned.

FOR ADDITIONAL ENTRIES (be sure to comment on each thing you do):
~Grab the Saving Little Hearts button and post on your blog (2 entries)
~Follow the Saving Little Hearts blog
~Enter this giveaway into any linky and leave me the link (2 entries)
~Blog about this giveaway with a link to this post and www.savinglittlehearts.com (3 entries)
~Follow me on twitter and tweet the following : You may tweet daily

Win a Saving Little Hearts Ronnie Raccoon @savhrts! http://tinyurl.com/slhblog

RULES: Giveaway will end March 18, 2010. Winner will be chose using random.org and winner will be notified via email. If chosen as the winner you will have 48 hours to confirm. If no confirmation in that time a new winner will be chose. Good luck to all entrants!

2010-02-20T10:22:00.004-05:00

Support Saving Little Hearts by enjoying http://www.thepizzakitchen.net/ today. Portion of proceeds donated to helping those with congenital heart defects.

It's so easy and so good! Just stop by anytime today, February 20, 2010, and enjoy a great meal. A portion of what you spend will then be donated to Saving Little Hearts.

The Pizza Kitchen is located at 9411 Northshore Drive, Suite 102, Knoxville TN (just behind Dunkin Donuts).

After you enjoy a great meal please cast a vote for the best Knoxville pizza place. Your votes are needed for this SLH supporter - Vote for The Pizza Kitchen on the Best of the wtnzfox43.com HOT LIST. http://bit.ly/9Y2g2B

2010-02-09T16:03:00.004-05:00

February 7-14th is Congenital Heart Defect Awareness Week

Many people are celebrating this week in a variety of ways. We'd like to recommend you spread awareness everyday by buying the official CHD ribbon car magnet. You can purchase the ribbon at http://zbchde.homestead.com/awarenessstore.html.

If you are interested in spreading awareness by sharing your CHD story please email it to info@savinglittlehearts.com.

2009-12-31T11:51:00.004-05:00

What did Saving Little Hearts do in 2009?

In 2009 Saving Little Hearts was able to double the number of care packages sent out in 2008. SLH sent out over 2000 surgery care packages to families whose child was having an open heart surgery. In 2010, our goal is to send out at least 100 surgery care packages every week.

We cannot do this without your support. Please sign up for our monthly giving program and help us reach out to more families showing them that they are not alone during such a dramatic time in their lives. Did you know that a child is born with a congenital heart defect every 15 minutes? Our hope is to reach out to as many of these children as possible but we need YOU to help.

Comments about our care package program from medical professionals:

"When I gave out my ﬁrst care package, the mom and dad were so serious and burden laden. I handed them the bag and a transformation appeared on both of their faces. The momentary release of tension was better than any bottle of pills that could be prescribed."

- Whitney Partin, RN, MSN, CCRN LeBonheur Children's Medical Center

"The families of the babies in our unit come from all walks of life, including many who are underprivileged. No matter what their status in life, it is gifts such as yours that brighten their day. Your organization is to be commended for the wonderful work you do for the cardiac patients."

- William F. Walsh, M.D., Professor of Pediatrics, Chief of Nurseries Monroe Carell Jr. Children's Hospital at Vanderbilt

Please know that every amount will make a huge difference. Show your support and sign up today. There are many families facing surgery every day. Won't you help us help them?

2009-11-11T14:50:00.001-05:00

Do you have anything you are trying to get rid of? Are you cleaning out closets, drawers, or the garage? Are you trying to clear things out before the holidays? Here is your chance to get rid of your unwanted items and donate them to a good cause.

From now until Nov. 24th you are welcome to bring your items to 7731 Kingston Pike, Knoxville TN which is the former Boater's World building (across from West Town Mall) and donate to the Black Friday Yard Sale to benefit children with heart defects. We'll be there every Tuesday from 6-8pm and every Saturday from 8am to 3pm. If you need a different drop off day/time you can call Melissa Marti at 865-748-4605 and she can schedule a time to meet you there.

Be sure to also check www.blackfridayyardsale.com for updates as well as additional drop off locations and times. Thanks for your support!

2009-10-22T08:51:00.001-04:00

We had a few different photographers donate their time to take pictures for our golf event this year. Photos from the 7th Annual Mini Golf Tournament can be viewed at Your Expressive Moments and Stockdale Photography. As soon as I get more links I’ll pass them along.

Thanks for everyone’s support and to the 300+ people in attendance! I hope everyone had a great time. If you weren’t able to make it this year try to come next year. It is a fantastic event and you never know who’ll you get to play golf with. This year we had UT cheerleaders, UT athletes, Smokey, and our own Ronnie Raccoon playing golf with the attendees. We were also pleased to see Dr. Liske (East TN Pediatric Cardiology) playing putt putt as well. Hope to see you all again soon!

2009-09-08T09:42:00.001-04:00

CLUB LECONTE PARTICIPATES IN WORLDS LARGEST ONE-DAY CHARITY EVENT/CAMPAIGN

“A Night on the Red Carpet”

Club LeConte, a ClubCorp partner will be hosting “A Night on the Red Carpet,” September 24, 2009 to raise funds and awareness for the Muscular Dystrophy Association, Saving Little Hearts, and the Employee Partners Care Foundation.

Each year, ClubCorp affiliates participate in a charity event on the same day to benefit the Muscular Dystrophy Association, specifically “Augie’s Quest,” an initiative within MDA that is an aggressive, cure-driven effort singularly focused on treatments and cures for ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), and the ClubCorp Employee Partners Care Foundation making it the world’s largest charity event. Club LeConte has chosen to add Saving Little Hearts to their list of recipients. One hundred percent of the funds raised will go to these special causes.

Saving Little Hearts was founded in Knoxville, TN and is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Care Packages.

MDA is a nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

The purpose of the Employee Partners Care Foundation (E.P.C.F.) is to provide assistance to ClubCorp Employee Partners and their immediate family members during times of need.

Last year, ClubCorp properties raised more than $1.6 million through their events.

Tickets for the event will be $75 per person and the evening will include heavy hors d’oeuvres, and open bar, casino games, a silent auction, and live music by the band R.M.S.

“The ClubCorp Charity Classic and the ClubCorp team are making the most significant difference in our quest for a cure for ALS, “ said Augie Nieto, MDA’s national vice president and chief inspiration officer. “The technology and science are converging to make a cure possible, and ClubCorp will play a major role in making a cure a reality.”

For more information on the ClubCorp Charity Classic, please visit:

www.clubcorpcharityclassic.com or call Alexandra Tucker (865) 523-0405 x234.

2009-08-28T08:08:00.001-04:00

Personalized Saving Little Hearts Shirt
Congenital heart defects (CHD) are the most common birth defect and the leading cause of death in infants from a birth defect. In the United States alone, more than 40,000 babies will be born each year with a CHD. Saving Little Hearts is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Surgery Care Packages. Since 2002, Saving Little Hearts has provided care packages to several thousand families throughout the USA in addition to providing support through in person group functions and worldwide online parent matching. For more information go to www.savinglittlehearts.org

$10.00 from every shirt sale will be donated to the Saving Little Hearts organization. Please support this wonderful cause and purchase a tee today.

"What comes from the heart goes to the heart." -- Samuel Taylor Coleridge

This logo is printed on a high quality 100% ringspun cotton tee. These shirts are not pre-shrunk.

Please allow up to 2-3 weeks for shipping as this item is custom made to order.

Click Here to Place Your Order

2009-08-18T14:22:00.004-04:00

Photos can be submitted of anyone born with a heart defect (adult or child), living or deceased, and from anywhere in the world. You can upload your photo at http://www.savinglittlehearts.com/photo_submit.asp. If you have any problems uploading your photo please let us know right away so we can make sure that your photo doesn't miss the August 31, 2009 deadline.

ONLY during the month of August you can save $5 per calendar by pre-ordering before the inside pages are available. Each calendar is regularly $20 but now only $15. Avoid the rush. Order your copy at http://newsite.savinglittlehearts.com/?id=305

Don't forget...ALL photos are used in the calendar. No one will be left out.

Pre-Order Price: $15.00
Regular Price: $20.00
S & H: $5.00
Buy Now

2009-07-30T11:55:00.005-04:00

Grant's Story
Grant was born 5 weeks early on March 14, 2007, weighing 4 pounds, 12 ounces. His birth was induced because I had high blood pressure. Prior to his birth, we had no idea that he had a heart defect. He was diagnosed as having Intra Uterine Growth Restriction (IUGR), but the doctor found no other issues with him. He was born via emergency c-section, and like many c-section babies, he had to be on oxygen for a bit after birth. He seemed to be doing fine, and was even allowed to come to my hospital room the day after he was born.

The next day, the neonatologist came to my room to tell me that they heard a murmur when listening to Grant’s heart. He said that many babies have a murmur, and that is would most likely close on it’s own. That same day, we learned that Grant wasn’t eating like he should. They decided to put a feeding tube through his nose to help him get the nutrition he needed. He was placed in the special care nursery at our hospital, and from that point on, he was not allowed to come to my hospital room.

We spent 3 weeks in Special Care, working on eating, and growing. After those three weeks, he had started finishing bottles (45 ml’s each) and was gaining weight. We thought we were on our way home with him. However, we were told that his murmurs were not getting smaller, in fact, they believed that it was much bigger than they originally thought after looking at his echocardiograms. We were informed that he had a large Ventricular Septal Defect (VSD), and a moderate Atrial Septal Defect (ASD). The neonatologist wanted to move us to the Neonatal Intensive Care Unit and start Grant on Lasix and Digoxin to help his heart function better.

We were in NICU for 5 weeks. When we were first sent there, it was just to start his medication, and get us used to giving it to him before we were sent home. However, Grant stopped eating on his own(it was just too much work for him), had an Necrotizing Enterocolitis (NEC) scare, and only gained 1 pound. We were told by the consulting cardiologist that he would most likely need open heart surgery to repair his VSD and ASD, but that nothing could be done until he reached 20 lbs and was at least 6 months old. We were concerned by this news because he was being force-fed through a tube…and had only gained one pound in 2 months. How was he going to gain enough in 6 months to have his surgery?

We contacted another cardiologist, in another city, for a second opinion. After looking at Grant’s chart, he told us that they would do surgery now. My 2 month old son left the hospital for the first time in a helicopter. He weighed 5 pounds, 14 ounces when he had his open heart surgery. His VSD was patched and his ASD was sutured. We stayed in the hospital for 10 days after surgery, waiting on Grant to eat on his own. He finished his first bottle (60 whole ml’s!) on May 25, and was released from the hospital for the first time on May 26, 2007.

2009-07-21T11:49:00.002-04:00

Dr. Yvonne Bremer and Dr. Michael Liske can be reached at 865-971-6897. Their new office, East Tennessee Pediatric Cardiology, is located at 2001 Highland Ave, Suite B, Knoxville, TN 37916.

They will be offering the following services:

Outpatient and inpatient consultation for all cardiac concerns:
- Congenital heart disease
- Acquired heart disease such as Kawasaki disease, rheumatic heart disease, cardiomyopathy, myocarditis, etc.
- Inpatient management of the critically ill neonate
- Arrhythmias
- Chest pain, syncope, and other potential cardiac conditions
- Cardiac manifestations of genetic conditions such as Marfan syndrome, muscular dystrophy, and others
- Adults with complex congenital heart disease
Transthoracic echocardiography:
- Interpretation of studies performed at ETCH and UT (please request their practice to read the study if you desire they do so)
- Scanning and interpretation of studies performed in our office during consultations (they do the scanning ourselves using the latest equipment)
Transesophageal echocardiography
Fetal echocardiography with prenatal counseling
Exercise stress testing

2009-07-06T13:12:00.005-04:00

Saving Little Hearts is pleased to co-host the 3rd Annual CHD Symposium with Mended Little Hearts at Duke Children’s Hospital on July 25, 2009. The symposium is free to everyone interested in learning more about various issues concerning children with congenital heart defects. Volunteers will be on hand to help with childcare.

Register now for the 3rd Annual Symposium

The current list of speakers/topics for 2009 are:
• 9:00am – 9:45am: Dr. Angelo Milazzo - “Prenatal Consultation and Fetal Echocardiography: An Early Window on Congenital Heart Disease.”
• 10:00am – 10:45am: Buck Darden, CVT - “History and Future of Cardiac Catheterizations”
• 11:00am – 11:45am: Steve Catoe, adult CHD survivor with Tricuspid Atresia
• Break for Lunch
• 1:00pm – 1:45pm: Dr. Michael (Jay) Campbell - Pediatric Cardiac MRIs
• 2:00pm – 2:45pm: Dr James Jaggers – “Neurologic Outcomes in Kids with Congenital Heart Disease"
• 3:00pm – 3:45pm: Mr. Kevin Lucia - Private Health Insurance

Suggested Accommodations for the symposium are:
1. The Brookwood (right across the street from Duke Hospital) $79.00 per night. Call (800) 716-6401 or online
2. Various other hotels will give the medical rate for symposium attendees. Call (877) 633-7829 or medstay online (the Millennium Hotel is the closest to Duke)

Special thanks to the generosity of the Durham Bulls management for donating tickets for every heart family member to attend the Bulls vs. Tides game beginning at 7:05pm (registration before July 13th required for game attendance).

Sponsors of the event include:
Saving Little Hearts
Mended Little Hearts
Philips Ultrasound
Gore Medical Products
Familion
Durham Bulls Baseball

2009-06-08T22:43:00.004-04:00

A special story from Lauren (a 21yr. old Tricuspid Atresia aka HRHS Survivor). Thank you so much for taking the time to write this and share it with us. We are honored to be able to share it with everyone.

I can still recall my first traumatic memory; actually it was my first childhood memory. I was sitting in a big red chair and I had tube coming out of my chest. I was crying and in pain. I did not understand what was going on. I reached out to be held, but I was not picked up and I couldn’t understand this. As I got older I was finally told why I have this memory. I was born with a Congenital Heart Defect called Tricuspid Atresia or Hypoplastic Right Heart Syndrome and I had two open heart surgeries. When I was born my parents and the doctors didn’t know I had a heart defect. I was written off as a healthy baby girl and a welcomed second child. It wasn’t until the first weeks of my life when I became ill that my mom knew something wasn’t right. I couldn’t keep any food down, I wasn’t gaining weight, and I started to get a rash all over my body. My mom kept taking me to the pediatrician week after week and all they ever told her was that I was a mucusy baby and that I would grow out of it. My mom knew in her heart that something was wrong. By the time I reached 11 weeks old I would turn grayish-blue when I cried and my breathing became very labored. My mom rushed me to the ER of the nearest hospital. They did an echo and an x-ray on me only to find out that I was in severe heart failure and that I needed medical attention ASAP. The doctors called for an ambulance to take me down to Children’s Hospital even before they came out to tell my mom what was going on. They told my mom that I was very sick and didn’t know if I was even going to make the ride to the hospital. They also told her that there was no room in the ambulance for her to ride with me. My mom called my dad at work to inform him of the situation and tell him to come down to meet her at the ER before they took me to Children’s Hospital. My parents followed behind the ambulance. In a moments time my parents were thrown into every parents’ worst nightmare.

They waited hours in the ER of Children’s Hospital before they knew what was going on. A cardiologist, the one I still have today, came out to explain the situation: that I was still alive, what I had, and a plan on where they are going to go from there with my care. That first day in the hospital I had my first heart catheterization to rip a hole in my heart so oxygen could get through my body. I went home a few days later in a variety of different medications and a special formula that consisted of concentrated Isomil with polycose added as I needed to be 10 pounds for my first open-heart surgery around 4-6 months of age. My mom tells me it was a grueling task to get me to eat and keep down all my formula. I’m sure it was a long and tough few months for my parents. And if that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. I’m not sure how they got through it, it was hard, but they had family members that were willing to help as well. In early December of 1987 I had my first open-heart surgery called the Pulmonary Banding. I was just 4 months old.

My mom tells me that shortly after my first heart surgery I started waking up from sedation and pulled out my breathing tube. I started to struggle to breathe and she was the only one in the room. She rushed out into the hallway and told a nurse. The nurse looked into my room and as soon as she saw me a code blue was called. My cardiologist and my surgeons came running down the hall. My mom said she felt like she was in a movie as it felt like forever for these three men in white coats to get there as she was trying to stay calm. Of course, everything turned out fine. My two surgeons weren’t happy with the PICU nurse who took so long to call a code blue. After a 10 day stay I came home just in time for my first Christmas. I thrived and was a happy baby, but that was short lived as I came down with a bad case of RSV which landed me in the hospital for a 4 day stay. After that scare I came home and continued to thrive and grow. I was happy and loved life. When I was a little over 2 years old it was time to go back to Children’s for my second heart catheterization. All did not go well as I developed a blood clot in my right leg and had to stay in the hospital a few days. Again, I survived and recovered well. My parents didn’t even get to collect their thoughts as less than two months later, in November of 89, I was back at Children’s Hospital for my second and most dangerous open heart surgery. I’m not sure exactly what the mortality rate was but it was pretty high for this type of surgery at the time I had it. The surgery went well, but I did spend exactly a month in the hospital.

After my second heart surgery I lived a pretty “normal” childhood or whatever normal is anyway. I had a few minor medical issues like another eye surgery when I was seven, bad case of chicken pox when I was ten, diagnosed with minor scoliosis when I was 13, but nothing major. Socially I was behind as a kid and went to Kindergarten twice. I was a very shy kid, didn’t have a lot of friends. I actually had a very hard time making friends and I would get teased. It was mostly because I was different. I couldn’t run very fast, couldn’t play any sports, and I had glasses. Kids with glasses can get made fun of in general. I always felt different, but I learned to accept it and I found my way. I was put in bowling as a kid and acting. I loved those things and they got me out of my shy self. By the time I hit high school the teasing stopped, but the not fitting in didn’t. I was never part of any “popular” group and never had a lot of friends and I was ok with that. I played on the girls’ varsity bowling team for three years, was one of the best on it, and earned my varsity jacket.

It wasn’t till my junior of high school where my life changed for me; it was a turning point so to speak. I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. It was at 17 years old that I found my strong faith in God. I turned to him through prayer for everything. I questioned my life, my CHD, everything, but tried to find peace. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted. I was diagnosed with Super Ventricular Tachycardia (heart palpitations), when I was 18 and I’m on beta-blockers for that. When I first got the symptoms of the palpitations it was scary for me. I had night sweats, bad chest pain, hard to breath, and harder to do daily activities. I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can. I could take more beta-blockers, but from the dose I’m on now plus my other heart medications I already get tired really easily that I just don’t want to risk anything right now.

Last year when I realized that I was getting older and heading into unknown territory for CHDers I took a hard look at my life and what I wanted to do with the time I have. One of those things was to help and bring hope and comfort to the CHD world. I made a promise for the rest of my life to be a part of helping the CHD world in some way. I ended up finding carepages last year by chance and started talking to CHD parents. Since then I’ve also started a blog and got involved in CHD organizations to help spread CHD Awareness. Aside from this I’m a junior in college and I’m majoring in psychology. In my spare time I love to write poems, read, spend time with friends, hang out with my loving boyfriend, and enjoy time with my family. I’m trying to plan for a long future as I have many goals for myself, though it can be mentally hard when statistics are always thrown in your face. My life has had its struggles, but it has had SO many blessings. I believe my CHD has had a huge part of who I am today. It has made me a very understanding, kind, and caring person. Though don’t get me wrong I’m far from perfect, I’m only human. God has blessed me with two amazing and loving parents that I am ever so thankful for. I have two wonderful brothers and I can’t imagine life without them. I have a wonderful family including my grandparents who love to spoil me. I have the most amazing and supportive best friend that I could ask for. I also have the most amazing, supportive, caring, and loving boyfriend I could ever ask for. I look to God and my loved ones for strength as I know my fight with my CHD is far from over. I will have more struggles to come, but I won’t sit and wait for them as I have so much to live for. So I will live, love, and be happy for today is blessed. If I had to sum anything up it would be in this quote that I wrote a while back.

A Quote by Me: "This life I've been given has not in any way been easy, but I would not give up my special heart for anything. It has taught me so many things and has taught others around me as well. I'm on a mission from God and I WILL complete it with no regrets or ever thinking that this heart I was given was a just a horrible mistake. God doesn't make mistakes."

2009-04-22T12:02:00.002-04:00

I vividly remember the moment when Pamela came to me with the news that she was pregnant. She, very noncholontly, entered the office where I was playing on the computer. Pamela was holding a pregnancy test with a blue line across it. It took me a few seconds to realize the significance of this blue strip and what it meant for our future. We were so excited, scared and proud. All of these emotions were occurring at the same time. We were excited because we were about to start a new chapter in our lives. We were scared because we were starting a new chapter in our lives. We were proud because, in our minds, we had done it the right way. We had bought a house, gotten married, and made sure our professional lives were stable and in order before adding another human being to our family. We were ready to become caring, loving, and responsible parents.

When we finally decided the time was right to start telling our family and friends the news, we became very familiar with the usual line of questioning.

“What will you name the baby?”

“We’re not sure yet, but we’ve narrowed it down to a couple boys names and a couple girls names.”

“Are you going to find out the sex of the baby?”

“No”

“Do you have a preference of a boy or girl?”

“No, we just want our baby to be healthy.”

This was the truth. We honestly didn’t care about the sex of the child. All we wanted was a baby that would have a carefree childhood, “normal” adulthood (in hindsight, I realize that none of us have a “normal life” because a “normal life” is impossible to define) and the chance to grow old peacefully. Was this asking too much? Apparently so.

During the twenty week ultrasound, it hit me, there really was a being growing and developing in the womb of my wife. The technician showed us several shots of body parts. It was difficult for me to make out exactly what I was looking at but I knew one thing for sure, our child was on it’s way and soon we would be proud and doting parents.

The next day our lives changed forever. While at work, I got a call from Pamela. As soon as I heard her quivering voice I knew something was wrong. She told me, while holding back her tears, that something was wrong with the ultrasound and she had an appointment with the OBGYN at Maine Medical Center. We would no longer be going to Mid-Coast Hospital for services regarding our pregnancy. The night after Pamela’s appointment with the new OBGYN we sat on the couch dumbfounded, shocked and confused. “How could this have happened to us?” “We didn’t deserve this.” What are we going to do?” Pamela had been told that our baby’s heart hadn’t developed correctly. The right ventricle hadn’t grown and would never be functional. Pamela was also told that we would need to make a decision about whether or not to terminate the pregnancy. Even though we were instructed not to research our dilemma, we could not help ourselves. What we found was demoralizing. We read that children with this condition have a life expectancy of ten to twenty years, many related complications and an overall poor quality of life. This was all very difficult to read. The dream of becoming parents had turned into a nightmare.

The next day, we visited the pediatric cardiologist at Maine Medical Center. During this visit we were told that we had read the night before was not completely accurate. “Your son has hyploplastic right heart syndrome,” the cardiologist slipped (we didn’t want to know the sex of the child). “With several surgeries and lifelong monitoring he should have a chance to live a productive life,” the cardiologist told us. We asked about life expectancy and were told that it’s hard to tell because the procedures are relatively new and advancing all the time.

We were going to have a son. A son that would be debilitated throughout his life and would never be able to live an active lifestyle. How could this be? The son of a physical education teacher and college athlete father and high school varsity three sport athlete mother would never be able to enjoy the benefits of athletics or an active lifestyle.

We walked out of the cardiologists’ office with a new perspective on things. Termination of the pregnancy was never offered as an option, which was refreshing because neither of us could stand the thought of going through with that procedure. Over dinner that night, we vowed to combat the situation with optimism and love. We would raise our son with love and give him every chance and opportunity to have a decent quality of life and be a successful and productive member of society. We would also put our faith in the medical community to continue research and technique development in order to increase our son’s life expectancy.

The rest of the pregnancy went fairly routinely with the exceptions of regular visits to the cardiologist’s office for ultrasounds and an amniocentesis performed to check the development of the lungs. We had a baby shower, decorated the nursery and began preparations for the arrival of our son in earnest. The emotions of anticipation mixed with feelings of doom and dread. Were we ready to raise a handicapped child? Would he look different than other infants? How do we tell our family and friends? How long will he survive? As much as these thoughts forced themselves into our psyches, we refused to allow them to break us. Our son’s condition was what it was going to be. He was who he was going to be. We couldn’t control any of those things. All we could control was our vow to raise him with love and optimism.

On July 19th, 2007, Noah Matthew was born by caesarian section at Maine Medical Center. He cried immediately and we heard his voice for the first time. The nurses cleaned him, I was able to cut his umbilical cord and then the nurses administered the APGAR test. He scored a nine out of ten. What a beautiful baby. I was in love. The kind of love that is so powerful, it takes your breath away. If you hadn’t known Noah’s pre-existing condition, you would have never known what kind of fight he was in for. After letting Pamela see him briefly, Noah was taken from us for further testing. It would be several more days before we could hold him.

When I went to the NICU to talk to the cardiologists, I was given news that neither I nor my wife wanted to hear. Noah’s condition was more serious than expected and he would have to stay in the NICU until he could be operated on.

Noah would spend the next five days in the NICU. He was unable to eat or experience the nurturing embrace of his parents. Our only contact with him was through the isolate that he spent the first five days of his life. During these five torture filled days, we realized we had a fighter on our hands. Noah was fighting for his life from day one. Whatever the future holds for Noah, we know that he has the courage and determination to stand up to the challenges that his unfortunate condition throws at him.

After five days of watching our son from outside an isolate, we walked with the nurses while they wheeled him into the surgery room. After saying our goodbyes and I love yous, we prepared ourselves for the wait. If you have never experienced it, time seems to stand still while waiting for your child to come out of surgery. It is excruciating. You know that your little son is lying on a cold, sterile, metal table with his chest cavity open. Will the surgeon perform the procedure efficiently and effectively? Will there be complications? Will he survive? Is God watching over our little angel? These are all thoughts that race through your mind. As much as you try to remain positive, these thoughts continue to force themselves into your consciousness.After several mind numbing hours, the surgeon came to us with the news that the procedure was a success. The relief set in. We were overjoyed. Even in these first moments after learning our son had survived a major surgery, a sickening realization set in. This would not be the last time our family had to go through this terrible experience. Also, it wouldn’t get any easier.

When we arrived to the intensive care unit where Noah was recovering, we saw our precious little boy, only five days old, lying on an adult sized bed hooked up to countless machines and monitors. He was sleeping peacefully but all the while you could tell he was fighting. Noah was fighting for survival. Throughout the next couple days the lines would come off piece by piece. Finally, after almost two weeks in the hospital, Noah was going to be able to go home.

The next three months were tough. Noah was in constant pain. What a way to start your life. Even though we knew Noah was in pain and uncomfortable, he brightened our lives. Gradually, things got better. After about two and a half months, Noah was sleeping through the night, off his pain medication, visiting the Dr. less frequently and starting to develop his own wonderful little personality. Just as things started to go well for Noah, it was time for his second major surgery.

Like I said before this one was no easier. Actually, it was harder. We had fallen deeper and deeper in love with this boy and to hand him off to a stranger who would take him back to that cold, sterile, metal table was awful. Once again, Noah came through very well. We spent another week in the hospital watching young Noah recuperate from his second open chest cavity surgery in his first three months.

Nine months ago, Noah celebrated his first birthday. What a celebration it was. Pamela and I have vowed to make every one of Noah’s birthdays as special as possible. Every year of Noah’s life is a challenge and a success story. Noah is slightly delayed in his gross motor skills. Every milestone (rolling over, crawling, walking etc.) that a baby reaches seems to come just a little harder for Noah. At seventeen months, Noah is just starting to walk. He loves people. He is the type of child that brightens a room and brings joy to everyone who he meets. He has certainly brought a level of joy into our lives that I once would have thought impossible.

One day we will have to explain to Noah that he is different than other boys and girls. I do not look forward to this. I am sure he will want to know, “why me?” I am not sure I will have the answer. We will continue to raise our precious little angel with love and optimism. We are confident that Noah will continue to fight and deal with his condition to the best of his abilities. We pray that the medical community continues research and progress towards fighting congenital heart disease so our son’s lifelong struggle will not be in vain.

2008-09-16T16:09:00.004-04:00

Max was born on August 29, 2002 at Baptist Hospital. Within hours after birth, a cardiologist, Dr. Thomas Doyle, came into my hospital room and told my husband and me that our pediatrician had detected a heart murmur in our baby and that he would have to be transported by ambulance to Vanderbilt Children's Hospital right away. It felt like my heart had hit the floor. My husband checked me out of the hospital and we met Max at Vanderbilt Hospital.

Because of the Labor Day weekend, Max had to stay in the ICU for 5 days. On September 3, 2002, Max had coarctation of the aorta.

After that, we continued our scheduled cardiologist appointments regularly to make sure that Max was doing well. During one of our doctor’s visits, when Max was 3 years old, the doctor discovered 2 holes in Max’s heart, also, a ridge that was obstructing the blood flow and the possibility that his aortic valve could be missing a flap.

Unfortunately, we knew another surgery was soon to come

At 4 years old, Max was scheduled to have surgery to have the 2 holes repaired, which did not close on their own, and to have the ridge removed. Also the surgeon would determine during surgery, if the aortic valve was missing a flap and what to do about that.

Upon arrival on the day of surgery Max had a cold and the doctor agreed that surgery had to be put off until he was well, which ended up being a grace of God.

Prior to the scheduled surgery, his cardiologist detected an irregular heart rhythm. The doctor then put off the surgery and ordered Max to have a cardioversion and an ablation, which did not help his heart rhythm. Max’s heart was delayed between beats and he had to be monitored constantly.

Within a few months Max had his original scheduled surgery to repair the holes and the ridge. Since his heart was out of rhythm, Max also had to have a pacemaker implanted in the center of his belly. The good news is the aortic valve is normal and has all 3 flaps and that Max is great now.

It has been nearly 2 years since surgery and all routine test results look great!

2008-08-06T17:35:00.004-04:00

On July 4, 2005 at 8:32am Addison Jacob arrived in the world; our own little firecracker. The next morning the doctor heard a slight heart murmur and sent the baby for an EKG and an x ray. Later on that day he phoned us to explain that from the results of the tests he thought Addison had a Ventricular Septal Defect (VSD). We were told that this is better known as a hole in his heart. The next day we discussed the things that we needed to watch for that could mean Addison was having complications. We let everything sink in and took our “little man” home on July 6, 2005. He was watched closely by our pediatrician for 5 days until he could be seen by a Pediatric Cardiologist (PC). On July 12, 2005 the VSD was confirmed by an echocardiogram. Addison had a moderate size hole in his heart and possible stenosis in his pulmonary valve caused by the heart working harder due to the hole. However we were told that the outlook is good; most holes close on their own over time. The PC discussed with us once again all the things to watch for, trouble eating, sudden falling asleep while eating, trouble breathing, and trouble gaining weight. We returned to the PC in August when Addison was 6 weeks old. Addison was doing great he had gained a good amount of weight and had no blue spells or trouble breathing. Our next visit wasn’t going to be until November; when Addison was 4 months old. The last 2 visits had gone so well if this visit goes the same; we wouldn’t have to go back until Addison was a year old. November 3, 2005, a day we will never forget. Going to this appointment hoping for the best turned into a new diagnosis and upcoming surgery. During the echocardiogram the PC discovered that not only was there a hole in his heart and the stenosis of the pulmonary valve. He also discovered that there was a blockage and a muscle build up from the heart working so hard. It was explained to us that these four things make up Tetralogy of Fallot. A CHD that needs to be repaired with open heart surgery. We were very lucky though because Addison was considered a “pink tet” and never had any complications before his repair. The problem we had was that with no complications, looking healthy and gaining lots of weight the concept of open heart surgery was hard to digest but….
Addison’s repair took place on January 3, 2006; everything was a great success with a great outlook for the rest of his life. A wonderful out come for our “special little man!”

UPDATE March 2nd 2006 – At his follow up they found another hole in between the bottom 2 chambers of his heart. This is a hole that would have been left alone during his surgery. We are now just waiting and hoping that it closes on its own. Our next appt. is in Sept. when we will see what else Addison has in store for us!

UPDATE September 28, 2006 – Addison had a sedated echo today to get some good pictures of his heart. The small hole they found at his post op appt is closed; the Dr could not find any signs of it today!!!!!! His gradient (the pressure in his pulmonary valve) is basically unchanged. 8 weeks post op it was at 18% and today he said it was about 30%. He explained to us though that on the echo the gradient is always higher and if the were to do a heart catheterization it would probably only be around 20%. There is NO leakage around his pulmonary valve, yes I said NO leakage and that is such a wonderful thing to hear!!!!! The only concern Dr. Lapuk had was that right ventricle is larger that he thought it should be. He however is going to compare this echo to older ones and see if this is just the normal for Addison. And the best news of our day!!! We do not have to go back until next September. Yes a whole year away!!!!!

UPDATE October 01, 2007 -- Addison did great today and came out with flying colors! Everything is just about the same as it was a year ago!!!!! Mommy and Daddy were so proud of Addison! He sat great for everything ...well as great as an active toddler can! No tears, no telling the Dr no!! We go back again in Oct of 2008.

2008-04-03T12:17:00.004-04:00

Our 3rd child, Alysa Beth, was born on April 24th of 2006. She was taken from us a few hours after birth to be lifeflighted to Doernbecher's Children's Hospital 3 hours away from our home. Luckily, after her birth, our doctor had picked up on a heart murmur and had told us it was pretty normal with most babies and that they would continue to keep a close eye on her, until a few hours later. I had a cesarean and was left behind at our local hospital, while my husband went with Alysa on her lifeflight journey. What an empty feeling, as if we'd already lost her.

Alysa had to have open-heart surgery at only 3 days old, in which the doctors had inserted a "conduit". It won't grow with her, so she will continue to have a few more surgeries as she grows. She had to stay up there in Portland, Oregon for her first 5 1/2 weeks of life. No, she wasn't a preemie, either. Full term. The ultrasounds didn't pick up on anything.

Everything seemed so normal. Come to find out, she has Tetralogy of Fallot with Pulmonary Atresia and a rare chromosome disorder (DiGeorge Syndrome), along with a few other medical conditions.

She now has "school" (Early Intervention) to help her. She has limited movement in her right side, but is using her right arm a lot more, thanks to Early Intervention! With her medical conditions, she may have trouble growing, trouble with sight, hearing, speaking, and learning. As of now, she is very far-sighted and has astigmatism, but that seems so very little compared to all she's been through.

Alysa had to have a Cardiac Catherization in November to open a valve in her heart. No stent needed at this time.

We have had a lot of support and prayers from all over the United States.
Thank you all so much!

Alysa is truly a blessing from God! Lots of personality and very loving!!!
Very strong-willed and determined. She's our little angel..............our Alysa Beth!

2008-02-19T09:09:00.005-05:00

Joshua’s Story

On May 26, 1999 a beautiful, baby boy was brought into this world. Like most HLHS babies, Josh looked completely normal weighing 6 pounds and 7 ounces. Josh was diagnosed with HLHS two months before birth at a routine ultrasound. After diagnosis, Josh’s mom was urged to abort the pregnancy. This was an unthinkable thing to do and the option was quickly thrown out. We were extremely thankful to find out about Josh’s CHD before his birth. Many hours were spent researching and connecting with other families that had been through what we were getting ready to go through. Upon delivery, Josh was flown to Kosair Children's Hospital in Louisville, KY. Two days after birth, Josh underwent a very long 22-hour Norwood procedure. The procedure was so long because too small of a shunt was put in the first time, and the surgery was pretty much performed twice. The second time a larger shunt was put in. After Josh got home from the Norwood, he was taken to the ER three times due to high heart rates. Finally, at about 3 months old, Josh was diagnosed with WPW Syndrome, and underwent a radio frequency catheter ablation surgery to destroy the extra pathway. On October 11, 1999, Josh had the Glenn surgery. He got out fairly quickly, but was readmitted for two weeks because he developed a staff infection. On September 5, 2001, Josh had is Fontan surgery. Everything went smoothly, and Josh was back home in less than 2 weeks. Since Josh’s Fontan he has not been admitted to the hospital except for the heart cath. he had on March 17, 2006. The cath. went absolutely wonderful! The only thing Josh’s cardiologist had to be done was balloon the stent in his pulmonary artery due to narrowing. Josh’s O2 sats were in the 97-99% range. Josh had an EKG, echo, and X-rays on March 1, 2007. Everything looked great and his O2 sats were 93%. Josh has had multiple cases of bronchitis and pneumonia, but all in all he has been very healthy for living with half a heart! The family gives all the glory to God and continuously praises Him for his grace and mercy!

Josh’s full diagnosis: HLHS, TGA, Ebstein’s Anomaly, WPW Syndrome

2007-11-15T15:49:00.000-05:00

Erin was born in Nashua, NH in November 1993. Right before she went home from the hospital her pediatrician heard what he believed to be the murmur of a VSD and recommended that she see a pediatric cardiologist. When she was 8 days old an echocardiogram revealed a moderate sized VSD, moderated sized ASD, right sided aorta, and abherrant left subclavian artery. The right sided aorta and abherrant left subclavian artery combined to form a complete vascular ring, encircling the trachea and esophagus. She was not showing any signs of distress so her parents took her home with instructions to watch for signs of congestive heart failure. When she was 3 weeks old a bout with RSV sent her into heart failure. She was placed on Lasix and digoxin. Over the next 11 months she had recurrent RSV, bronchiolitis, and ear infections. She was in and out of the hospital repeatedly until her first birthday. At the age of 1 it was revealed during a routine echo that the ASD had spontaneously closed. With these findings her cardiologist felt that it was worthwhile to continue to watch her to see if the VSD would also close. He felt that the vascular ring would eventually need to be repaired but that this could wait until she was older. Over the next few years she did well. She was smaller than other children her age but could still keep up. At the age of 8 she began to have problems breathing and swallowing solid food. Her cardiologist felt this was due to the vascular ring which tightly encircled her trachea and esophagus. In May 2002 she underwent a video-assisted thoracotomy (VATS) to repair the vascular ring. The doctors still believed it was premature to repair the VSD, even though it had not changed in size over the years. After the VATS procedure she seemed to have fewer problems swallowing, although her breathing was still labored when she was active. The doctors did not feel this indicated any problems and recommended continued monitoring of the VSD, which they felt would not adversely affect her over the course of her life. However, by the age of 10 her parents were not comfortable continuing this conservative treatment. Erin seemed to tire very easily. On February 5, 2004 the Kelleys traveled to NYC to consult with cardiologists at NYU Medical Center. After an echocardiogram revealed that her heart was considerately enlarged and leakage from several valves was occurring, they recommended surgical repair. Fortunately surgeons at NYU have developed a minimally invasive open-heart procedure which eliminates the trauma of a sternal approach. Instead, an incision through the right side of the chest between the ribs allows surgeons to access the heart. This approach is both cosmetically and medically desirable. The resulting scar is cosmetically superior, infection rates are lower, and healing time is greatly reduced. During surgery on February 8, 2004 it was discovered that Erin had developed a double chambered right ventricle which is a rare and very serious complication of VSDs. In this defect an abnormal muscle bundle develops, causing an obstruction within the right ventricle and tremendous stress within the chamber. Without repair the right ventricle becomes so muscular that it cannot properly fill with blood. In a 5 1/2 hour procedure surgeons were able to repair both the VSD and the DCRV and Erin had an uneventful recovery. She was back to school 10 days post-op and went skiing just 6 weeks after surgery! Today Erin is healthy and plays soccer and lacrosse competitively.

2007-07-12T16:53:00.000-04:00

Azlynn Claire was born November 16, 2004. She weighed in at a healthy 6 lbs. 6 oz. Her Apgar scores were 9/9. She seemed to be in picture perfect health. Azlynn was breast fed and grew at a normal, healthy rate. She never had any symptoms of CHD.

However, in July of 2005 Azlynn had a slight cold. I took her to her pediatrician who did a routine exam on her. When she listened to her heart she told me that Azlynn had a murmur. I knew that some babies have murmurs and didn't become frightened until she suggested that Azlynn have an echocardiogram at University of Alabama's Children & Women's Hospital. Her pediatrician, Dr. Michelle Naman, said she didn't think it was serious but she wanted to make sure all was well. So, approximately 2 weeks later Azlynn had an echo. From that moment on, our lives changed.

Dr. Naman called me shortly afterward to let me know that Azlynn had a hole in her heart. She was referring her to a pediatric cardiologist, Dr. Ann Hackman, in Mobile, Alabama. We were to be at Dr. Hackman's office the following day. I was terrified of what I would learn about my perfect little girl.

Dr. Hackman told me that Azlynn had a condition called Atrial Septal Defect. She said the hole was small and she thought it would close as Azlynn grew. It was 9mm when the first echo was done. Azlynn was put on Lasix to reduce the amount of fluid around her heart and was ordered to have an echo every 3 months to monitor the hole.

Life returned to normal aside from the fact that Azlynn could spend little time in the sunshine and went through more diapers than twins would! She danced at 6 months and walked at 8 months. She was a very happy baby, definitely asymptomatic.

In August of 2005, about 2 months after her diagnosis, Hurricane Katrina hit the Mississippi Gulf Coast where we live. We were fortunate enough to evacuate and come home to a house that was not damaged. However, we didn't have power for a week afterward and our drinking water was tainted for a long time. I knew that if Azlynn got an infection from the water it could compromise her health. I not only had to buy drinking water for her formula, but to bathe her in also. There were distribution centers everywhere, but no one could give me enough water. The stores that were open and still standing were sold out of water. I resorted to bathing her in the sink with one gallon of water at a time. The weather was hot and humid and she wore only a diaper. She wound up with a horrible diaper rash that turned into sores. I was very worried she would get an infection that would spread to her bloodstream, but she didn't. We made it through the aftermath of Katrina.

After struggling through the destruction of our hometown, we persevered. Azlynn continued going to the cardiologist to have echocardiograms done. For the next 9 months the hole never got any larger. She was walking and starting to talk. She was still asymptomatic.

In June of 2006, I noticed that Azlynn was starting to tire while eating. She would breathe hard when she walked. I mentioned it to her cardiologist who worked her in for an early appointment. At the office, her echo showed that in just 2 months her hole had gone from 9mm to 15mm. Dr. Hackman recommended surgery as soon as possible. She arranged for Azlynn to have surgery July 18, 2006 in New Orleans, La.

About a week before her surgery, the folks in New Orleans called and said that Azlynn's surgeon had had a brain aneurysm and was hospitalized. Surgery was canceled. I had already taken leave from my job and worried about the financial effects of the cancellation. But, Dr. Hackman's staff stepped in and arranged surgery for July 19, 2006 in Birmingham, Al. at University of Alabama at Birmingham. I was so scared because my fears had become reality. My little girl had a date for open heart surgery.

We met with Dr. Kirklin, her surgeon, the day before her surgery. He was a very nice, confident man. But I was still scared. Azlynn was put on a heart monitor the night before the surgery and she wore it like a diamond necklace. She was only 20 months old, but it seemed like she understood the situation like an adult would. Another echo was done and the surgeon confirmed that her hole was 15mm. We would proceed with surgery the foloowing day, July 19, 2006.

That morning, I couldn't have been more of an emotional wreck! Azlynn was given a sedative about an hour before surgery but she was still alert. As we walked down the long hall toward the surgery area, Azlynn named off all of the family members walking with her. She was doing a roll call that she would repeat several times in the near future. The CRNA took a crying Azlynn away. I was sure I would collapse there in the hallway.

We waited an agonizing 3 hours in the waiting room. My stomach churned and I cried. And I cried and then I smiled. I thanked God for modern medicine. I waited as patiently as I could for them to tell me that my baby girl's heart was beating again. And it happened.

Soon I was led into the Cardiac Intensive Care Unit to see Azlynn. She was on a ventilator. She had 3 drain tubes coming from her abdomen. She had donor blood going into her tiny body. She had a towel wrapped around her head. Her body was swollen. But, her hole was closed. They told me that it was actually bigger than they had expected. Originally, we thought the hole was 15mm, but it was 19mm. Her surgeon said that her heart was significantly enlarged and her recovery may be a little slower than average because of that.

I stayed in the waiting room for the next 24 hours until she was moved to a regular room. Every few hours I was allowed back to see Azlynn. I cried every time. But every time, she was getting a little better. Between the first and second visits, she had had the ventilator removed. She was awake and asking for Mama in a scratchy little voice. She was mad because she was thirsty. But, my baby was better!!!

Much to our surprise, Azlynn was released from the hospital 4 days after her surgery. She was doing super. After a week, Azlynn was once again active. She has been doing great since. She has to see her cardiologist annually. She isn't on any medications. She only has a very beautiful love mark on her chest where God gave Dr. Kirklin the ability to fix her heart.

Thanks for letting me share Azlynn Claire's story!

Abby

2007-06-05T13:03:00.000-04:00

Lauren was born on July 2, 2003 on July 3, 2007 she we were told that she has a serious heart defect called Tetralogy of Fallot compounded by Pulmonary Valve Atresia. We will never forget this day. We were packed and ready to take our new baby home when the Ped. came in and told us he heard a murmur and that he had called a PC in to take a look at her. The PC was up to see her in just 10 minutes from there things moved very fast. The PC came in with a picture that he had drawn and told us that Lauren was in very critical condition and that they had moved her to the ICU and called the Pediaflight team from our local Children's hospital. We went to the ICU were they gave us a picture of Lauren and a bag with her cloths in it. We met the entire Pediaflight team. We were told to get to the Children's hospital ASAP. The hospital was a 45 minute drive for us, however it seemed like hours. We walked into the ICU and gave Lauren a kiss as the took her to the Cath lab. She was in that Cath lab of over 7 hours, they tired to open the membrane to her pulmonary artery. After 7 hours they came out and told us that it did not work and that she would need a shunt placement. On July 4th our older two children came to the hospital and we had Lauren Baptized. Since it was 4th of July all the doctors were off so they would not do the shunt placement until the 6th. The morning of the 6th came and they took Lauren off to surgery after 6 hours they came out and told us Lauren had done wonderful. A week later we went home. We were home for about a week and Lauren came down with a 101 temp. We rushed her to the children's hospital were she was admitted for Endocarditis. We were in the hospital for 2 months for treatment. We finally brought our little one home again to have to rush her back a few days later. She had developed Colitis as a result of the medicine given for the Endocarditis. Thankfully we were able to treat her at home. Around 5 months of age Lauren started having a lot of blue spells, and her sats were in the low 80's we went in for a heart cath and they found she had already outgrown the shunt, we were told this would not happen until she was a year old. Again things moved fast and she had her repair at 6 months old. She went in and after 8 hours they came out and told us we could go see her, when we walked in her bed was covered with doctors and nurses. We were told that she was bleeding to much and that they were rushing her back in. Our wonderful ped. was there and talked to her doctors then came to the ICU waiting to be with us. After 2 hours they came out and told us she was doing great. By 6am the next morning she had pulled out all of her IV lines and was trying to pull out the tube to the Vent. The doctors made their rounds and the took her off the Vent, the next day we went to the Special Care Unit and home three days later. Lauren will be 4 in July and has been very healthy since. We are on Yearly PC appoints. We know Lauren will have more surgery in the years to come.

This year we worked really had and had the Governor of Mississippi as well as our local Mayor proclaim the week of 2/7/07-2/14/07 as Congenital Heart Defect Awareness Week.

Pictured Left to right , Mayor Greg Davis, Jayme, Lauren - This is when the girls received their proclamation.

Jayme was born June 15th, 2003. She also has Tetralogy of Fallot. Our girls met in the ICU on 1/28/04. Jayme had her repair on 1/27/04 and Lauren had her on 1/28/04. They were side by side in the ICU and we have been close friends since that day.

Thanks for letting me share Lauren's story with you.

Cordt, Mary, Kayla, Matthew & Lauren

2007-05-23T10:25:00.000-04:00

Austin was born October 7, 2002 following a complicated pregnancy and an emergency c-section. I had over 20 ultrasounds throughout the pregnancy to check Austin and because I had unexplained bleeding. The whole pregnancy I felt like something was not right, that something was wrong. On October 7^th I had a routine appointment because I was 35 weeks and getting ready to start going to the doctor every week. At the appointment they did yet another ultrasound, and saw that my fluid was low. So I was sent over the hospital for evaluation and was told I would be on bed-rest in the hospital for the remainder of my pregnancy. We expected 5 more weeks. As I was getting settled in the heart rate machine started beeping, Austin’s heart rate had dropped to 20. It came back up but immediately dropped again. So I was prepped for emergency c-section. At 1:34pm Austin was born pink, and screaming. He was only 4 pounds 13oz, but was gorgeous. So tiny, my first son was only 15 months old and he weighed 9 pounds at birth. So Austin seemed so little to me. Everything went fine, I was closed up and placed in my room and Austin was bought in. We had tons of visitors that day, and my other son came to meet his little brother. I needed some rest, so everyone left and Austin was placed in the nursery. I just could not stay awake, so it was better for him. At 11pm that night, my pediatrician came in the room and told me that Austin had a serious heart murmur and was being transferred to a larger hospital up north in Mobile, Alabama. They bought him in, he was in an incubator and on a ventilator for transport. It was so scary, I was not expecting any of this. Austin was transferred to the University of South Alabama Women’s and Children’s hospital. They have a great NICU. I was in pain because I had a c-section but my doctors were great, and gave me medicine so I could be awake and run up and down the stairs at the hospitals. A few days later after many tests, and IV’s all over his tiny little body, we were told he had Tetralogy of Fallot. He would need at least 2 open heart surgeries but would lead a normal life with a normal life span if everything went okay.

Austin spent a week in the NICU and then we finally sent home with a apnea monitor and instructions to what to look for. That week was great, gave me a small idea of what it would be like to have a new born and a 15 month old.

A week later, Austin had his first scheduled cardiologist appointment. We went into town, and his cardiologist immediately sent us back to hospital in Mobile. Did not say anything was wrong just said he needed to be looked at by them. So we drove the hour and half and when we walked through the doors, nurses came running over snatched him and said he was blue and was having a Tet spell. He looked the same to me. We completely missed the faint blue tent around his lips. He was prepped for transport again and life-flighted to Tulane Hospital in New Orleans Louisiana. We had to drive because there was not room for us. So we had a 3 hour drive ahead of us, so we left immediately in hopes of meeting him there.

We arrived at Tulane and were told that Austin’s heart was not doing well, and he would need emergency surgery. He was 2 weeks old and his weight was right under 5 pounds. They did emergency surgery the next morning, It was October 22^nd 2002. It was a 10 hour surgery, where they placed a BT shunt. Said that was all they could do because of his size. Surgery went great, and Austin did fine. I was okay too. Austin spent 1 week on the ventilator and 1 week on the floor, and then home we went. Again we were told what to look for and we were on Aspirin, and Lasix.

The next few months were normal. Austin had a heart cath and he gained a little weight, and got to know his older brother. We had doctors’ appointments, Cardiologist appointments, and WIC appointments. Austin was having these crying spells that were different for me. He would turn a little blue, and get really tired after. I told all the doctors, but they said it was normal for a baby to get blue while crying. But this was different. Something in my heart told me it was different. I listened to myself while pregnant and I was right, and now I know something is not right. So on Feb 8^th 2003 we went into the cardiologist again. This time he had a spell in the office while on the o2 machine. His o2 had dropped and our doctor grabbed the oxygen. We were life-flighted to Tulane New Orleans again and were told his shunt had clotted off and he would need emergency surgery again. We were in shock. Austin had his second heart surgery Feb 10^th 2003; he was 4 months old and weighed 7 pounds. They did a full Tetralogy Repair and closed the hole in his heart. It was a long surgery. 18 hours to be exact. We were not expecting what happened after the surgery. He was so swollen, and his color was horrible. The doctors said that because it had only been 4 months since the last surgery, recovery was going to be horrible. And they were right. Austin spent 30 days on the ventilator. He had pneumonia twice and a collapsed left lung twice. He was having fevers but never showed a sign of infection. We attempted to take him off the ventilator 7 times before he finally got off. We spent another month in the hospital for all of his feeding, and weight issues. But finally we went home. He was on methadone, lasix, and aspirin. They said he might need a new valve FAR in the future. And that he should be fine.

A whole year went by. We had a few heart caths, three I think, but it was all in the normal day to day things. It was great. I got divorced, was taking care of both the boys and living the best we could. I was even dating again. It was almost normal. Then yet another cardiologist appointment. I had a bad feeling about this one, and did not know why. I just did. Went in for his echo, and they said that his valve was really leaking and he needed to schedule surgery and have it done ASAP. So we called Tulane and scheduled it. It was a few days away. March 14^th we drove to New Orleans, 15^th we had pre-op and the 16^th he had his 3^rd open heart surgery. Austin was 1 year 5 months and weighed all of 20 pounds. They replaced his pulmonary valve with a pig valve, and placed a stent in his left pulmonary artery. We knew he had stenosis after the 2^nd surgery but they said it looked okay and with the new valve it would get lots of blood flow. This surgery was 6 hours because of all the scar tissue. Everything was a success. Austin spent one night in the PICU and two days on the floor and after just 3 short days we were home. I WAS AMAZED. After the 2^nd surgery I packed for a month. And did not need any of it.

We were having cardiologist appointments every three months, and every month in the winter. Austin has had his RSV vaccination every winter since he was born. Just in case. It was December 2004, at one of our cardiologist appointments they could not longer see the left pulmonary artery putting blood to the lungs. So we were sent for a heart cath. We were told that his stent in his left pulmonary artery had clotted off. That after this long with no blood flow his left lung is barely functioning. We needed to get ready for a ride, and get on the heart and lung transplant list. His right lung, would work for a while, but after the left lung dies, the right lung would be overworked and give out also. And because of his arteries to the lungs being nonexistent and the other being very weak he would need a complete transplant. We were devastated. We went into a follow appointment with Dr Joyce. We love Dr Joyce. He was Austin’s cardiologist at New Orleans and now he was our cardiologist in Jacksonville Florida. We all moved the same month.. THANKS GOD. He was not happy with the outcome of that meeting and thought there had to be another way. So he went to work. And called us January 2005 to say he found a doctor in California that was doing artery construction and sent him Austin’s file. He was ready to reconstruct Austin artery and save his left lung. NO TRANSPLANT. So late Feb 2005 we flew to Palo Alto California to meet Dr Hanley. Lucile Packard Children’s Hospital is wonderful. They have a CVICU and you have a private nurse 24 hours a day. It was so great. Austin had his 4^th open heart surgery. They placed a shunt from his aortic to the left pulmonary artery. There is more pressure and it would force the artery to open faster. We spent a week in the hospital before flying home to Georgia. By this time I had remarried and my new husband is Military. THANKS TRI-CARE. They pay for everything when you travel for medical.

We were told within 6 months Austin was having his 5^th surgery to reconstruct the artery but because he does not grow fast it was 10 months. Austin had several heart caths to check his progress in those 10 months and did fine every time. And in December 2005 (right before Christmas) we flew to California for open heart surgery # 5. They reconstructed his artery and tested his lung. They also checked his pig valve and said it has minimal leakage and is in great shape. So they did not have to replace it. Austin’s artery was almost normal size. We spent a week in the hospital again. But Austin did great. He had two radiation lung scans which showed minimal growth but that the lungs were okay. The right was great, but the left we would have to wait and see.

Going home was great. Austin was newly healed, and setting off alarms. I had to have letter showing the reason for the radiation. But the airplane was fine and Austin loved it. Then driving home, we live on a secure Submarine Base and Austin set off the radiation alarms. It was so fun for him.

Austin had another radiation lung scan in Florida and it showed we saved 2/3 of his left lung. We were hoping for ½ so YEAH. Austin is great now. We recently move to Washington State, and have new doctors and new medical help. We will still go to Lucile Packard in California depending on what they are doing. We are very lucky in that we can go to the best doctors in the world, and it does not cost us a dime. We are so glad that Tri-Care covers step-children 100%.

Austin is 4 now. He weighs 30 pounds. He goes to preschool, goes to gymnastics, and is the sweetest kid ever. I have learned so much over the last 4 years that I would never trade for anything. We know Austin has at least 3 more open heart surgeries in his life time and so many heart caths we can not even count them. We don’t consider them surgeries, just procedures because we have so many. We keep life normal for him. No one would even know Austin has a heart condition unless you see his chest or ask him. He is a completely normal child.. We give thanks for the medical care we have received at all the different hospitals across this country we have been to. Whether it was Alabama, Louisiana, Florida, Georgia, California, or now Washington we have been blessed with great people with huge hearts.

Thanks and many prayers

Valeri
Mom and Navy Wife
Derek HH 5 years old
Austin Tetralogy of Fallot with severe stenosis of the LPA.

2007-05-09T19:31:00.000-04:00

Mason came into this world on November 29, 2003, exactly four weeks before my due date. We were so excited upon his arrival, as were our other two children who were 12 and 10 yrs. old. At the time of his birth, all seemed well. His coloring was good and after being looked over by the NICU team, he appeared “healthy”. Shortly after bringing him home, my husband and I noticed that his coloring seemed to change. There were times he looked dark or dusky, and other times he looked perfectly normal. Then one day as I had him in the bath, he seemed to curl up and his skin was blue!! I was alarmed and knew that something was not right. We took him to his pediatrician who immediately ordered a chest x-ray and an echo. We didn’t know what an echo was and we were sure that everything was going to be fine. No sooner had I got home from the echo, we had a message on our answering machine to call our pediatrician as soon as possible. They asked me to come back to the office and asked that I bring my husband. On the way to the office, I called our church to ask for prayer. I had no idea what was ahead of me, but knew we needed God’s hand upon us. The pediatrician told me Mason had a congenital heart defect called Tetralogy of Fallot. He drew a diagram of it and explained it as best he could. He asked that we drive him to Children’s Hospital Central California (CHCC) in Madera to determine a course of action. I recall the nurse also telling me not let him cry if possible. Once we arrived at the hospital which was about 2 hrs. away, he was evaluated by the cardiologist, Dr. Kenneth Rouillard, who concurred with the diagnosis. He was admitted and hospitalized for almost 1 week as the surgeon, Dr. Malcolm MacDonald, explained the situation and gave us a few options. We chose the complete repair and on January 4, 2004, he underwent emergency surgery to repair his defect. The surgery lasted approximately 6 hours. During surgery, another anomaly was discovered - his coronary artery was lying over the pulmonary artery preventing the surgeon from repairing his own pulmonary valve, without the possibility of causing a heart attack. The decided to put in a conduit and a donor tissue valve. Thankfully, the surgery was successful and after approximately 1 ½ wks. in the hospital, we were able to bring him home. He has since had another surgery to replace the donor valve, which he outgrew within several months. Mason is now 3 yrs. old and doing wonderfully. We are so thankful of the staff at CHCC in Madera, and to friends, family and our church family, who have been so supportive throughout his hospitalizations.

2007-05-08T08:25:00.000-04:00

I think most all of ours stories sound the same after a while with numerous surgeries (Madison’s first was Tetrology of Fallot and later a valve replacement) and numerous days in the hospital (ours have been countless), but we hardly ever talk about what CHD has meant to us. The terms get thrown around and we all shake ours heads in agreeance about repairs and prognosis, but there is more, isn’t there?

I know for us CHD has changed our every single day from her date of birth on. We thought our world had ended with the diagnosis…we had entered some unchartered waters and had no idea what to expect or who to talk to. Didn’t it truly feel as if you were the first to ever receive such news? “What to do” certainly wasn’t in my baby book! Four years later, 2 open hearts, endless admissions, countless medicines, I have finally changed my mind. I came across a saying that says, “If you cant change it, change the way you think about it”. CHD has become a blessing to us. We thank God for every single day, we know what to stress out about (high blood pressures, unexplained fevers, swelling) and what NOT to stress out about (traffic, mail running late, a flat tire). We had been to the depths of despair, in 3 years planning her funeral twice. Now we are living life…I mean REALLY living life! We lie in the grass, play in the rain, roll down the windows and sing to the radio. Because of Madison’s suffering we now take every moment remembering, this moment…right now in time…almost didn’t happen. We almost weren’t here; we almost weren’t able to do this with her. I went from being the “perfect” Mom with my Son to now sometimes encouraging a little bad behavior like, eating dessert before dinner and staying up too late with the kids to watch a special movie. CHD and Madison made me realize we get one chance, we have to take it for all its worth. I’ve changed the way I think about it…I took a bleak prognosis and decided it would be a constant reminder that the clock is ticking for all of us, and we are going to fill every hour, minute and second with love, laughter and LIFE!

2007-04-18T09:36:00.000-04:00

Our journey with congenital heart defects began on January 28, 2004, when an ultrasound indicated our daughter had an enlarged left ventricle. We were referred to the hospital for a fetal echocardiogram within a few days and received the diagnosis of severe critical aortic stenosis with fibroelastosis secondary to the stenosis. We scheduled a prenatal echocardiogram with Dr. Carlen Gomez at the University of Michigan’s Congenital Heart Center in Ann Arbor. She gave us the option of trying an experimental procedure in Boston to open our daughter’s valve while still in the womb in hopes of preventing HLHS. Angelina’s dilated left ventricle was not contracting well and had much scar tissue due to the pressure from the very narrow valve with very little blood flow. The aortic valve was successfully ballooned at the end of February in Boston at just 23 weeks gestation. We were the 19^th ones to have the procedure done in Boston. We were hopeful at first that she would not develop HLHS; however, despite better blow flow, her left ventricle did not respond as we had hoped.

After birth, Angelina developed sepsis (a blood infection thought to be due to a line infection) and her surgery was delayed until she was 18 days old. She had some trouble after the Norwood initially with lower saturation levels, water retention, a partially collapsed lung, and difficulty remaining extubated due to mucus. Angelina came full circle and started having saturation levels in the 90s. She was beginning to eat from a bottle. When we had everything ready to go home the next day, Angelina developed a mysterious stridor(whistling sound when she breathed) and chest retractions. She had many signs of congestive heart failure. Trachea or vocal cord conditions had to be ruled out by the ENT department as well. There were theories of the shunt being too large from her Norwood, possible aspiration while feeding, and/or a combination of factors. Angelina ultimately ended up being placed on the ventilator again, in the intensive care for a couple of days, and then was fine when she extubated! She was discharged at 2 months old. She stayed home until her hemi-fontan surgery at 5 ½ months old.

We have been fortunate that Angelina has been relatively healthy. She was in for one week recovering from her hemi fontan surgery with only one scare involving a partially collapsed lung and mucus once again. She is walking, talking, and acting like other children her age. Her favorite sayings to her 4 ½ year old brother, Nickolas, are “No, mine,” and “My show.” It is truly amazing how far she has come! Angelina has brought great joy to our home, allowing us to not take for granted the little things in life. We anticipate her cath on May 22, 2006 and her Fontan on June 26, 2006 after we celebrate her second birthday.

2007-04-16T10:42:00.000-04:00

Will's Story

Our son, William ("Will"), was born five weeks early on October 10, 2005 via c-section at Vanderbilt University Hospital. We knew from the 18th week of pregnancy that he was going to be born with some abnormalities, including congenital heart defects. At birth, he was diagnosed with the following: Coarctation of the aorta, double outlet right ventricle (DORV), Hypoplastic left heart syndrome (HLHS), single kidney, and cleft palate.

At four days old, life flight took our sweet baby Will to University of Michigan so that Dr. Edward Bove could perform his first open-heart surgery, the Norwood Procedure. The surgery itself went beautifully, but some complications occurred afterward. It was discovered that Will had suffered a stroke during the surgery, which caused a small brain bleed. His little brain became slightly swollen, which required neurosurgery. A VP shunt was placed so that the extra fluid in his brain could drain into his abdomen. Then, Will was having trouble coming off his ventilator, and it was thought that his airway may have been injured from his breathing tube. The doctors were pretty sure he was going to require a tracheotomy, so we asked that Will be transferred back to Vanderbilt Children's Hospital for the procedure, if needed.

On November 22, 2005 we arrived at Vanderbilt, eagerly awaiting the Vandy doctors' evaluations. As it turned out, Will did need a tracheotomy, which was performed on December 14th. Will did very well, and after a few issues with infections, we prepared to take him home.

About three days before Will was set to be discharged, he deteriorated suddenly and we came very close to losing him. A heart cath was performed and it was determined that Will was in need of another open-heart surgery soon. So, on February 2, 2006, Will was transferred back to University of Michigan so that his surgeon, Dr. Bove, could perform the Rastelli Procedure.

February 9th, 2006 was surgery day. From the very beginning, Dr. Bove said he was not very hopeful. At one point, they said that Will was not coming off the bypass machine, and that they would try to keep him alive long enough so that they could bring him upstairs so he could pass away in my arms. They said that there was no hope. But, a miracle happened, and Will came off the machine. In fact, he remained relatively stable overnight and for the next several days. At one point, they even talked about getting him ready to go home, when he developed an infection in his chest incision from his trach. His problems started to snowball from there, and on March 5, 2006 we decided to let him go so that he could be with Jesus.

Will lived for only 147 days. It sounds so short. And it leads to the profound mystery of life…and to the most asked question in life…Why? Instead of asking ourselves, “Why did he die?” We choose to step back and ask a greater question, “Why did he live?” It only took Will 147 days to do amazing things and to touch so many people.

2007-04-12T04:25:00.000-04:00

A Grandparents Story

I would like to tell you a story about how our life was changed when a special little boy come into it.

On April 6, 2000 a special child was born, our grandson Dayton James.

Dayton changed our lives forever and threw us head first into a world we never dreamed we would enter.

This world would bring hopes and dreams, along with heartache and frustration. It was the world of Down syndrome, the world in which Dayton is to live his Life.

Dayton's world is not what we once dreamed it would be, but it is his world.

It is important to remember that Dayton is still a child first, and then he has Down syndrome second.

Dayton was not only born with Down syndrome but he had a VSD and ASD; a VSD is a large opening between the ventricles in which oxygenated and deoxygenated blood mix. Dayton also had pulmonary hypertension from this defect.

Dayton spent 2 weeks of his life in the NICU at Mercy South Hospital and was put on O2 and a heart monitor. You see Dayton stopped breathing the day after he was born he turned blue and was rushed away from us all in his mother’s room.

On April 19, 2000 the day came when Dayton was able to go home; a day before his daddy’s birthday, what a birthday gift. It was a gift we all got on that day. Dayton had to stay on his Oxygen at all times 24 hours a day 7 days a week. He was also on an apnea monitor to let us know when he was not breathing.

Dayton had to under go open heart surgery on July 12, 2000 to repair 2 large holes in his heart. Without the surgery Dayton would die. His Daddy gave the doctors the go ahead with his surgery. There were many prayers for this little boy and we had to put it in our heavenly Father’s hands. Dayton came through this with God’s love for him and great doctors care from Sanger clinic, being Dr Watts who performed the delicate surgery.

Dayton was in Carolinas Medical Center in Charlotte, North Carolina from July 12, 2000 the day of surgery to that Monday July 17, 2000. His Grandpa and I got to walk down the halls of that hospital with the best gift of all ...our grandson with no oxygen, no monitors, with a small beating heart that no more would miss a beat or over flow pressure. That day for us was a day God had in his plans and we will never forget it.

Dayton brings us much joy and much love more then I can ever put into words. We know in our hearts that God above sent this angel to our family.

We are full time Grandparents, something I never dreamed of being but would not ever want it any other way now. We knew being grandparents was going to be special and we would see the baby as much as we could. We see him a lot because he is with us day after day, week after week and month after month, we enjoy him so very much. We never dreamed we would be so much in love with a little person as we are with Dayton. He teaches us something new each day.

Lisa

2007-04-10T14:51:00.000-04:00

In April of 2003, our little girl Serafina was born.

She appeared healthy and was a generally happy child, and we had no reason to suspect she had a life-threatening heart defect. When she was18 months old, she became very gradually less and less active, and at 19 months, her appetite decreased considerably, and I noticed that her breathing was labored. I took her in right away to the doctor. He suspected pneumonia, and after a few days in the local hospital with no improvement, she was flown to a children's hospital about 2 hours away.

While there, a doctor noticed on one of her x-rays that her heart was enlarged. She had severe dilated cardiomyopathy, specifically left ventricular non-compaction. The next day, she "coded" and God spared her life the first time. She was then flown to Stanford Medical Center, to be considered for transplant. In the course of four days, we went from having a sick toddler to having a child possibly in need of a heart transplant.

We spent three weeks at Stanford, after which Serafina was released and did well on oral medications at home.

However, after several months the heart failure worsened and at the end of April, 2005, Serafina went into cardiac arrest while at the hospital for a routine clinic visit. That night, the doctors told us it was "extremely rare" for anyone with her severely low level of heart function to survive cardiac arrest.

God had spared her once again. They said that her only survival option was transplant, and to survive long enough for a donor organ to become available, she would need a device called The Berlin Heart, an artificial heart pump for children. However, it was not approved for use in the US, and would need emergency humanitarian approval from the FDA to have it sent here from Germany. The only way to keep her alive long enough until the device arrived was to put her on ECMO, the heart-lung bypass machine.

The device arrived after five days, she had a 7-hour surgery to take her off of ECMO and implant the Berlin Heart, and for nearly 8 weeks she lived in the PICU attached to the heart pump. Though there are risks with the device, she gained strength and became healthier overall while on the Berlin Heart. A donor heart became available at the end of June, the transplant went well, and her recovery was swift.

Now, Serafina is an extremely active child, full of energy and curiosity. Life continues to be a challenge, but we would never have entered into such blessings if we had not endured so much hardship and suffering. You cannot survive this type of ordeal as a parent unless you live one day at a time, and live each day to the fullest. I had, at one point, fought so hard in my mind against a transplant. But it was our only option for her survival, and God's way of healing her for His purposes. His ways are not our ways, His thoughts are not our thoughts.

2007-04-09T17:12:00.000-04:00

On November 30th 2006, our beautiful baby boy Charlie was born into this world, and on December 4th, he left to become an angel.
At our 18 week ultrasound we found out that Charlie was going to be born with a heart defect called transposition of the great arteries. We were told not to worry because this was on of the easy ones to fix. For the rest of the pregnancy we were worried of course, but very optimistic that we'd have a wonderful outcome. On Tuesday, November 28th, my water broke unexpectedly. I was scared because I was only 34 weeks and 5 days pregnant. I knew it was too soon for Charlie to be here, so I was terrified. We went to the hospital where they told us that my water had indeed broken, and that they'd get me into a room and call my doctor. 15 hours later, they decided to induce me. After 28 hours of labor, (17 hours of natural/no drugs, and 11 hours with epidural) I didn't progress past 3 cm, so a cesarean section was done. They hurried Charlie past me so I could see him as they were getting ready to transport him to nearby Children's hospital. Our Charlie was rushed to the NICU because when he stopped crying, he would stop breathing. They diagnosed Charlie with Respiratory Distress Syndrome and told us his lungs were not mature enough. (I had asked them if they could give me steroids when my water first broke to help develop his lungs and they said "no, he should be fine").
After bagging Charlie for 6 hours to help him breathe, they finally got him on a oscillatory ventilator.
As I sat in the recovery room at one hospital, our Charlie fought for his life at another one. When I finally got to my room, my mother told me that Charlie was in trouble (no one had told me anything before that time because I was so out of it that they didn't want me to be hysterical). My mom went and told the nurses that I needed to be taken via tunnel to Children's to see my son. They said "no" because I still had the epidural in and they needed my doctors approval. They said that I could see him tomorrow.
My mom told them I needed to go NOW because he may not be there tomorrow. The nurses immediately hoisted me into a wheel chair, and took me to see him.
When I saw him, he was hooked to many machines and monitors. He was still blue, despite being on a ventilator. The chaplain was there and both my husband and my family were praying. (they bended the 2 people per bedside rule that night so everyone could see him) Charlie was baptized just in case the worst happened.
The praying and the baptism seemed to work, because Charlie improved significantly. Over the next few days, Charlie was slowly being weaned off of the ventilator (although not completely). He has a balloon septostomy/heart catheter procedure done on December 1st to open up a hole in his heart to allow his heart to function better until he was well enough for surgery. The risks for this procedure were heart attack and stroke, although the chances of either of those happening are so tiny that the benefits outweigh the risks. The only thing we noticed after the procedure was that Charlie's leg was purple afterward since they put the catheter in at the top of his leg.
December 2nd and 3rd, Charlie continued to improve. On December 2nd, we had very few visitors. We took that time to spend with Charlie without the pressures of entertaining others.
On December 3rd, we got to hold Charlie for the first, and sadly the last time while he was here on earth. It was the happiest day of my life. The nurse felt comfortable enough to let us hold our Charlie although he was hooked up to a million machines and monitors. I sang to him, and rocked him. Both my family, and my husbands' family came from out of town to spend the day with Charlie.
That night, as my husband and I were leaving for the night we felt safe knowing Charlie was being well cared for. (We only were going 100 feet to the Ronald McDonald house next door) We kissed Charlie goodnight, talked to his nurse for a bit, and then kissed him again and left. We went to the Ronald McDonald house to try to get some rest.
Exhausted, we reluctantly fell into an uneasy sleep, but only for a little while. Only a few hours later, at 1:42 a.m. on December 4th Corey received an alarming phone call from one of the nurses at the NICU. She said to come quickly because Charlie's heart had stopped.
We raced to the NICU, only to find 30 doctors, nurses, and other medical professionals surrounding our son. They looked hopeless. They tried for over an hour to help Charlie find a regular heartbeat, but it was to no avail. At 2:54 a.m. on December 4th, our Charlie became an ANGEL.

2007-04-08T12:14:00.001-04:00

Shortly after Keegan's birth he began having difficulty breathing. His pediatrician was called in to examine Keegan. She suspected a heart defect. When Keegan was less than 48 hours old he was airlifted to another area hospital where Hypoplastic Left Heart Syndrome was confirmed. When Keegan was just five days old he underwent his first open heart surgery - The Norwood Procedure. The surgery went well, with no complications. All appeared well for a while.

Keegan began having problems just two weeks later and underwent his second open heart surgery, an emergency surgery to repair a leaky valve and to narrow the shunt that was placed two weeks earlier. This surgery also went smoothly with no complications, but one month later Keegan was still not thriving on his own and was being paced 100%. At this time we were told the only option for our son was a heart transplant.

On May 12th of 2002 Keegan was moved again to another hospital that specialized in transplanting infants. Keegan immediately began testing to see if he was in fact a candidate for a heart transplant. He was, and the next day he was placed on the national registry for organs sharing. Next began the longest six days of our life. We waited for roughly one hundred and thirty-four hours for Keegan's new heart. Considering the average wait time for an infant organ we hardly waited at all, but it seemed like an eternity. I received the call at 1 a.m. on May 19th that they found Keegan a new heart. He was immediately prepared for surgery and had his transplant later that morning.

He had no complications and recovered very quickly. Keegan came home two weeks later and is now a happy, healthy 5 year old. We feel very fortunate and blessed to still have Keegan in our lives. So many times in his short life we have been so close to losing him. He is our hero, our little superman, and we feel honored that such a special little boy found his way into our arms.

TO VERY SPECIAL PEOPLE:

We want to thank you, but what do we say,
To let you know our true feelings today?
To express our gratitude and show appreciation,
To show you the heights of our joy and elation.

Keegan now smiles and he coo's a lot, too.
This wouldn't have been possible for him without you.
We're so very sorry you suffered such loss.
We know your gift was given at such a great cost.

All of us want to thank you, each and every last one.
We know you are special for what you have done.
With comfort and peace, we ask God to bless you.
Just know we are thankful to God and you, too.

Love from,

Keegan, his mommy and daddy, his grandparents, his great grandparents, his great-great grandmother, his aunts, his uncles, cousins, and all of his great big extended family.

This is not the end of Keegan's story this is only the beginning. As he continues to grow, may he find great happiness and much love.

2007-02-17T14:06:00.000-05:00

May 17, 2005, I took Tiernyn (almost 3 months old) to the emergency room for a slight fever. There I was surprised to find out he had lost weight since his 2 month check up. After several tests and a chest x-ray, the doctor told me that his heart was big and we needed to go to another hospital. We got there and were sent by ambulance to the pediatric intensive care unit at another hospital. There we were told our baby had a rare heart defect, anomalous left coronary artery to pulmonary artery (ALCAPA), and he needed emergency open-heart surgery. He had surgery on the 20^th. Everything seemed to be going great. Tiernyn was almost ready to go home. We decided his big brother, Taylem. could visit him on the 24^th at the hospital, since he looked so much better. After attempting to feed Tiernyn, the nurse and I attempted to put him back in his bed. He began to go stiff and all the machines began beeping. Doctors and nurses rushed in, I took our oldest son out of the unit, while my husband stayed with Tiernyn. I stood in the hallway in shock and panic holding Taylem, not knowing what to do. Somebody came by and opened a consolation room. Two chaplains came in and Taylem went with a child life expert. After 15 minutes of chest compressions, Tiernyn came back. The doctors were unsure how much damage had been done to his tiny organs due to lack of oxygen. They told us to be prepared for severe mental disabilities. He had aspirated because his heart was so big it had pushed his esophagus, so when he refluxed the formula it went into his lungs. Tiernyn had another surgery to implant a feeding tube.

Twenty two days later, Tiernyn was released from the hospital. Therapists still visit Tiernyn regularly and he does not eat by mouth, but his doctors seem amazed with overall his recovery. His current heart diagnosis is endocardial fibroelastosis, scar tissue in his left ventricle and a damaged mitral valve. We know there is struggle ahead, but we feel very blessed to have our little fighter.

2007-01-29T21:30:00.000-05:00

I was born with Tetralogy of Fallot. I imagine that you may be familiar with this defect or at least may have heard of it. It is the most common cyanotic CHD.

My initial repair was in 1982 when I was 10 months old. I was in the hospital for 11 days. From that point up until I was 12 yrs old was a relatively problem-free period of life. I was able to live a 'normal' life. I played baseball and basketball competitively and played other sports like football at recess.

One day in 6th grade I began to feel very wrong. My heart felt like it was trying to come out of my chest because it was beating so rapid. I couldn't jog or do anything strenuous without feeling faint and lightheaded. I was taken to the hospital and I was quite fearful. Turns out I had developed Atrial Flutter. As you may know, Atrial Flutter is an electric abnormality in the heart's conduction system. To correct this arrythmia, I underwent an ablation procedure. Ablation's are electro-physiological procedures that require the use of catheters threaded up into the heart to disrupt the malformed circuit. This arrythmia can come and go as it pleases (and it sure did). I would continue to experience Atrial Flutter and Atrial Fibrilliation over the next 11 years of my life. I have lost count of how many ablation procedures I have endured. I have also recieved IV fluids to correct the arrythima as well as being defibrillated (not fun). With the advancement in imaging/mapping technology, I underwent my last ablation in Dec. 2004. This procedure was very successful (praise God) and as a result, for the first time in 11 years, I was taken off medications (praise God).

Let me back track a bit. When I was 16 I received news that I would need another open-heart operation to replace my pulmonary valve. Upon hearing the news, I broke down and cried in my mother's arms. My worst nightmare was shaping into reality. I was very frightened and questioned God for a day or two. But, I began talking to my dad about all of it and he helped me to regain focus and reminded me that God was not surprised by me needing another surgery, He is still control. So, in the next couple of months leading up to my surgery, I experienced spiritual growth and maturity like no other period in my life. Knowing that so many people were lifting me up in prayer to the Almighty God just absolutely put a calm upon my heart. As a result, on the day of surgery, I experienced the peace of God. I cannot begin to describe what it was like except to say that I was ready for whatever may come. The surgery was successful and I received someone's heart valve as my own. I was in the hospital for 6 days.

God did not give me a spirit of fear, but of strength and power. I did not want to live in fear so I continued to play the sports I loved in high school. I continued to be active and live life. I am thankful that I did not have to miss any schooling during all of this. I was accepted into the University of Florida to much excitement. However, my freshman year was extremely difficult. I was taken to the ER via ambulance one night while lifting weights at the gym. The ER staff didn't quite know what was wrong so they released me. The very next night I experienced the same 'white vision' and found myself in the ER once again. It wasn't until I was able to see my cardiologists at home that it was discovered that my tricuspid valve was allowing significant leaking or regurgitation. I pretty much knew what was coming and sure enough, my dad told me that I would be needing another open-heart surgery. Instead of crying, I was more confident and prepared. Once again, I grew in my relationship with God in the months prior to the surgery. This 3rd operation's focus would be in repairing my tricuspid valve while also performing a cryo-ablation for potential arrythmia's.

July 2001 I underwent my 3rd open-heart surgery. I experienced Atrial Flutter post-surgery so I was taken back down to the ICU for the remainder of my stay. As it turns out, this would be an incredible blessing. As you know, ICU's are filled with unconscious people as a result of anesthesia or med's. Also, you know that ICU nurses are constantly monitoring and helping their patients. Enter me into the picture, a 19 yr old (in a children's hospital) that is slowly regaining strength and coherence. This meant that I was able to hold conversation. The nurses loved having a patient who could speak! Most of the patients were babies with some elderly patients mixed in. So, most nurses would come into my room just to chat a bit or check up on me. Through this I was able to establish friendships with a few of the nurses. To this day I still visit those nurses that took care of me (which is incredible). One thing I will never forget while I was recovering in the ICU was being able to visit the other heart babies in the ICU. I couldn't help but to picture myself as those babies and feel such compassion. I was able to meet with some parents that were at the bedside of their baby. Seeing their faces move from fear and anxiety to hope as I told them my story was an experience I will never forget. I couldn't help but to envision those people as my parents watching over me at my bedside when I was a baby. It was an amazing blessing.

So, here I am today as a 25 yr. old young man. I still am very active in playing sports (I play in a men's competitive softball league with my brother and father). I still have checkups twice a year. I undergo the usual echo's, stress tests, holter monitors, and EKG's. Who would have thought that I would make it to my teens much less my twenties? I wonder what images and fears flooded my parents minds when they learned their little boy had a CHD.

I will say this, if God had given me a choice to enter this world as a completely normal and healthy boy or as a boy with Tetralogy of Fallot, I would choose to have the Tetralogy of Fallot every single time. My life is a blessing that I wish never to take for granted. Because of my heart, my perspective on life has drastically changed. I cherish each day and try to live from an eternal perspective. Also, my relationship with God without my defected heart would not be the same as it is now. He has matured me and developed me through perseverance in the dark hours and therefore teaching me how to trust Him. Among the so many things I have learned, He has taught me to have the right attitude no matter what. Our attitude determines the choices we make. I could just have easily chosen to deny my heart struggles and become angry with God and the people in my life. But, with His help (and I would not be here without Him) and guidance, He brought me through safely, stronger, and wiser. He has replaced that fear I experienced as a 16 yr old with joy and gratefulness. I am so thankful for my heart defect. I would not be who I am without it.

So, today I move closer to graduating with a master's in biomedical engineering. I still am blown away that I am in graduate school. There are so many heart kids that may never experience college, may never learn how to read nor write, and may never be allowed to drive or play sports. Yet, here I am having been given gifts and abilities that are to be used for others, not for me. So, as I work on my thesis to try and improve patient/family education in pediatric cardiology, I keep those kids in mind. For this degree I pursue is not for me, but for them. I desire to give back for that which was so graciously given to me.

adam+

2007-01-23T17:50:00.000-05:00

My son Connor was born on May 1st, 2003 at Bergan Mercy in Omaha, Nebraska.

It was a c-section delivery because he was breach but it was a perfect delivery and he checked out just fine. That night I was holding him and he was turning blue and wasn't breathing very well so I called the nurse and they rushed him to ICU. Since I was recovering from a c-section I really did not realize what was going on and an hour later I was told to call my family because his condition was very serious. At 2:30am I called my family and they came to the hospital where we spoke to Dr. Amin a cardiologist from children’s hospital. He explained what his heart condition was and that they were shipping him to children’s hospital only 12 blocks away. Before they took him he was baptized by the chaplain at Bergan just in case. My husband and mother in law (who is a nurse) went to children’s with Connor and of course I had to stay.

The next morning I got a phone call from Dr. Duncan, one of the best cardiac surgeons in the world and he explained to me that Connor had Hypoplastic Left Heart Syndrome or HLHS which basically means that the left side of his heart did not develop properly so it is not able to function. My doctor let me out of the hospital that day and I was able to see Connor hooked up to every medicine possible. I was told he would not make it another 24 hours...but they were wrong.

There is a series of 3 surgeries Connor had to go through and they are too hard to explain for I still don’t know everything but the first Surgery was called the Norwood and although not recommended his surgery took place on May 15th 2003 which happened to be his original due date so we took that as a sign. He recovered better than anyone expected but it was a long hospital stay. We were there until he was 4 months old and we went home for 4 weeks and came back for his second stage called the hemi-Fontan or Glenn and that took place on September 30, 2003. We were out of the hospital in 10 days and were free until he was 2 when he would have his 3rd and final stage.

Connor had his Fontan August 30th, 2005 and it was a struggle. The fluid just would not leave him, so were ended up staying for 4 weeks and that seemed like a lifetime but it was worth it. After we got him home and started therapy again he started walking in April of 2006 just a month shy of his 3rd birthday. He is behind in a lot of ways and developmentally he is only 2. He started school in August of 2006 and was loving it until he got really, really sick and we had to take him to the emergency room at children’s.

September 20th, 2006. Connor had a bacteria infection in his blood and on top of that he fell at school a few day prior and developed blood on his brain which later went away. The bacteria in his blood is a mystery to this day. No one knows how he got it but they do know it came from his stomach and some how spread to his blood stream. After some more tests we found out that Connor’s last heart surgery was failing and we were told there was nothing that could be done so we thought we had lost him but we received the wrong information and after 10 weeks at the hospital Connor had surgery to "fix" his heart and we were home in 2 weeks just 3 days shy of Christmas.

This last stay was 3 months long and Connor got so weak that he still is not walking again but he is getting his strength back.

It's been a long 3 and a half years and every parent knows that having a child with a disability is not easy but we have to believe that God gave us these children for a reason and I've come to learn that everything happens for a reason even though we don't understand. There is so much that has happened in the last 3 years that it would take forever to type it all out but the main thing is that My son is strong, he went through 4 heart surgeries in 3 years and despite being told twice that he's not going to make it and the fact that he is still here is a miracle in itself. A few weeks ago I got a phone call about Make A Wish and just before that phone call I had forgotten what Connor had been through and that snapped me back into reality. I never thought at age 22 (now 26) that I would be raising a child with a heart defect and making a ton of friends along the way, some who had passed and some brand new and I am grateful for every one of them.

Not every ones story is the same but they are all alike. No matter what heart condition our kids have they all share one thing...their heart. They are all strong and amazing and I wouldn't change my son for the world.

I don't know how long I have with him but every day is a blessing and I cherish every breath he takes because he can be gone any second as I've learned by losing friends.

Today Connor is a very happy almost 4 year old who is back at school and causing problems with his 2 year old sister again. I never thought I'd say I miss the fighting but after that big reality check nothing bothers me a whole lot anymore. Even though his heart will probably never be "fixed" he is perfect in every way to me and I love him more than words can say.

Sorry I didn’t go through all the details but my story could be a novel if I sat down and wrote out everything.

Thanks for reading.

Jamie

2007-01-08T09:24:00.000-05:00

My Name Is Christian! I Was Born On Dec 5th 2005. I'm Currently 10 Months Old. I'm 18.5 Lbs and am fighting everyday!

I was born With a Congenital Heart Defect "CHD" Called Transposition Of The Great Arteries (My Pulmonary Artery and Aorta Were Switched, I Was Suffocating) I Was Struggling To Breathe But No Matter How Deep Of Breathes I Would Take It Wouldn’t Help!

I Was Rushed To Seattle Children’s (My Second Home Now) Where They Blew Up A Hole "ASD" In My Heart So I Could Get Oxygen To The Rest Of My Body!

11 Days Later I Had Open Heart Surgery To Switch My Arteries Back The Right Way. They Closed The ASD and Found That I Had VSD (Another Small Hole In The Bottom Of My Heart) and Pulmonary Stenosis (Narrowing of My Pulmonary Artery)

So They Waited A While and In Feb 2006 Cathed My Artery Bigger. During The Procedure Though No One Noticed But Something Bad Happened The Anesthesia Was Just To Much For Me To Handle And I Had A Stroke. I Hid It From Everyone For A Few Days... But Then I Started Seizing My Mommy Was So Scared. So Was I!

She Rushed Me To The Hospital & I Got To Go On My First Helicopter Ride! That’s When They Found Out I Had A Secret, I Had Had A Stroke. They Then Diagnosed Me With Epilepsy.

Months Later,

June 2006 They Went To Cath My Artery Again. I Was Able To Get My Right Side Cathed Perfectly and Stinted So It Would Stay Open. But No One Knew My Left Side Still Hadn't Healed From Feb. My Mom Was Sad But She Knows I’m A Fighter!

Other Than That I Recovered In 24hrs From Surgery & Went Home The Next Day. I Even Got To Go To Hooters, And See Horses! It Was Fun!

In Aug 2006 My Mom Dad And I Went On Vacation. I Had Caught A Cold And Cried The Whole Way To Texas. I Felt Bad But My Ears Hurt And I Didn’t Know How To Tell Mommy And Daddy!

I Was Sick For 3 Weeks And Mommy Got Worried So She Took Me To The ER In Early AUG. 2006 and They Found Out I had Bronchitis and A Bilateral Ear Infection. My Oxygen Levels Were Low..In the 70's. So I Got To Stay In A Hospital For 3 Days While On Vacation. It Wasn’t Really Fun But I Got To Ride In A Wagon and Hide From The 112 Degree Weather! He-He!

I Recovered Nicely...

We Are Back Home Now its Oct 2006. And Three Weeks Ago I Got Sick Again. We Thought It Was Just A Cold But After Two Weeks Mommy Got Worried Again And Took Me to My Pediatrician Around the 20th Of Sept. I Didn’t Have And Ear Infection Or Anything. They Thought It Was Just A Cold.

Then A Week Later She Took Me To The ER on Sept 28th. Because I Wasn’t Happy and Wanted To Be Held All The Time. & Had Lost My Voice. They Said I Just Had A Cold And Set Mommy And I Home.

Then A Couple Days Later Mommy And Daddy Took Me Back...But They Couldn’t Find Anything Wrong With Me Again...

But That Night After I got Home I Spiked A High Fever Again Of 104 Earlier That Day I Had Gotten To 103.5. Mommy and Daddy Were Scared.

I Seized With Grand Mal Seizures for 45min-1hr Non Stop.

I Got To Go On My Second Helicopter Ride.

I Went To Children’s Hospital Again, My Second Home. They Found Out What Was Wrong With Me. My Blood Was Hiding A Secret. I Had A Bacteria n My Blood! We Aren’t Sure What Kind Yet..

But I’m A Fighter And Although I Was On A Ventilator and I Was Hurting. I’M STRONG And Fought REAL HARD. So That My Mommy And Daddy Can Hold Me Again !

I Got The Vent Out And Mommy Held Me. It Was Wonderful I Needed My Mommies Arms! I Ate And Even Tried To Take Her Phone. I Still Don’t Feel Good. Its Oct 8th 2006 And I Am Having Trouble Holding My Head Up And Moving I’m Too Weak. But The Docs Are Sure I Will Get Better Just Will Take Time. They Say The Will Probably Never Know What Bacteria Got In My Blood Cause The Blood They Took From Me At The ER Got Contaminated!

I spent a total of 2 exact weeks in the hospital getting better. They never found out what was wrong! But I’m doing lots better now! I got sick again and have been ever since but I went to my pediatrician and he thinks im just allergic to dust mites.

In October I had my first Halloween, I was a vampire.. It was so much fun ut I passed out half way through the houses! And in November I had my first thanksgiving and it was the best! Turkey is really good and my favorite food is mashed potatoes so I got tons of those! Also in November I saw my first snow, That stuff is so much fun, BUT SO COLD! I went out everyday and played in it with mommy and daddy!

I turned one a couple weeks ago! Just before then I start walking on my own, I don’t do it all the time though I still prefer to crawl. It's much faster than me trying to walk! I point at things now, I play "where's the baby" with my mommy and daddy and I love it! I wave bye-bye now too, and still love to meet new people!

I don’t say much so the neurologist are a little bit worried but not much! So they are making take a hearing test Jan 8th! I also have an Echo that day to so soon I will find out when I will be getting my second stint and if I will need another open heart surgery. I pray not but if I must, I will not let it bring me down! I'm strong!

Bye Everyone,

Christian

2007-01-05T20:49:00.000-05:00

Olivia was born on January 25, 2006. She weighed in at an unsuspecting 3lbs 9oz. She was transferred to All Children’s Hospital in St. Pete, FL the same day for precautionary testing to see if a reason for her lack of size could be determined. Two days later on Friday, January 27^th, an Echocardiogram (heart ultrasound) revealed that Olivia had a Congenital Heart Defect called Truncus Arteriosus. A week after her heart diagnosis, we were told that Olivia had DiGeorge Syndrome, a genetic condition where she is missing part of her 22 chromosome. Because of Olivia’s lack of size, the doctors and surgeons decided to give her an opportunity to gain as much weight as possible to increase her chances of a successful surgery. This was also possible because she was not showing serious signs of distress. On March 7^th, at 6 weeks old, Olivia had her first open heart surgery. Olivia went the surgery and recovery with no issues at all. We were so happy.

On March 30^th, 64 days after being admitted, we headed home with Olivia for the first time. She weighed just under 6lbs and was getting bigger by the minute. A few days previous, she was given a feeding tube to assist in feeding.

Olivia is approaching her first birthday and weighs in at 13lbs 5oz! She has thrived since being discharged and continues to learn new things. She talks like she knows what she is saying, she will let you know if she is not happy and she definitely likes to watch her cartoons. She is developing normally and on track. Out biggest battle is feeding. Olivia still will only take about 3oz of milk by mouth daily. We are working hard with Speech and Occupational therapies to help her learn that eating can be fun.

Olivia’s prognosis is good. She will need additional heart surgeries in the future, we just do not know when. We live life one day at a time and cherish each and every moment that we are afforded. We know that we have a very special little girl.

Heart Hugs <3

Rodney, Jamie and Olivia

2006-11-13T09:10:00.000-05:00

April 12, 2005 I received the surprise of my life. At nearly 40 years old, I was expecting a baby. Now, I already have had 5, so you'd think I would recognize the signs! But, my husband Tim and I were just totally shocked by this news.

Because our older son had CHD and my advanced maternal age, I was sent for a level 2 ultrasound. I had prepared myself for something chromosomal, like Down's Syndrome. I just had that gut feeling. Even though we had an older son born with complex heart defects, we never dreamed we would receive that news again. We were told that his CHD was "spontaneous".

As I was watching my unborn baby on the screen, I sensed the change in the air. It was taking a long time. Tim went out to sit in the waiting area. The tech came back and took some more pictures. I could see that little heart. It looked different. I had been through these ultrasounds with three other children with healthy hearts. And then I knew...

The tech asked if I wanted her to find Tim. I told her no. I wanted to protect him, I guess.

The doctor came in and told me that my baby boy had several heart defects, among other things. He talked about chromosomal problems and advised termination, then asked to at least do an amniocentesis. I agreed to do that so we could know exactly what to expect.

Tim and I sat in the parking lot and cried like babies. Transposition of the great arteries, ASD, VSD, Pulmonary stenosis, possibly others. Other problems were also seen.

We cried out to God and our church family. They held us up every step of the way. (And continue to do so!)

We returned a week later and learned that the FISH amnio results were normal. We met the cardiologist and had a fetal echo. His diagnosis was Loop or corrected transposition of the great arteries, ASD, VSD, Pulmonary stenosis, Coarctation of the aorta.

That diagnosis changed over the weeks. It was a real roller coaster ride. The full amnio results were normal. We rejoiced that we were looking at *just* heart defects.

December 6, 2005, Elijah entered the world, pink and screaming. He was rushed to NICU for a PICC line. He left the hospital 4 days later without needing any assistance. He was held up for two days because of rising bilirubin levels.

His official diagnosis at birth was Corrected transposition of the great arteries, Double outlet right ventricle, ASD, VSD, PS w/sub PS, Hypoplastic right ventricle.

His ventricles were switched, both main arteries appeared to come from one ventricle, a hole between the ventricles, a hold between the atrial chambers, a smaller than normal pulmonary valve with blockage below the valve, and a smaller than normal right ventricle (on the left side).

Eli later developed tachycardia problems. That is now controlled by medicine.

His first surgery was scheduled for May 2006. The plan was to close the VSD, and repair the sub pulmonary stenosis. At his pre-surgery echo, we discovered that the VSD had closed on its own. This totally changed his diagnosis!

His new diagnosis: L-TGA, ASD, Sub PS, HRV. Doctors could now see that the VSD and the positioning of Eli's main arteries made for a tough diagnosis. The Double outlet was not a double outlet after all and his PS/subPS was listed as mild.

Eli's surgery was canceled. He sees his cardiologist every 3 months now.

We do not know what the future holds for Eli. All we can do now is wait and watch. EKGs and echocardiograms are normal and always will be for him.

Someone recently asked me if I could even remember what life was like before Eli. I guess I could if I tried...but I really don't want to!

Eli was perfectly, wonderfully made by the Creator. In HIS eyes, Eli is perfect!

2006-11-07T14:00:00.000-05:00

James

10/26/92-1/2/93

Fourteen years ago, I was in labor, awaiting the birth of my second child. The nursery was complete, decorated in a blue and mauve floral pattern.
My daughter, 1 1/2, would be sharing her room with her new baby sister.

Or so we thought.

At 1:51 pm, our son was born.

At least the floral print was blue...

I remember my Dad telling me that my family was now complete-a girl and a boy.

The following afternoon, our pediatrician came to give the baby an exit exam so we could take him home. She heard a murmur.

She told me that most murmurs were innocent, but she wanted a cardiologist to check him out, just to be sure.

The next afternoon, we met Dr. Stuart Birnbaum. He drew a picture of our son's deformed heart and called it the most complicated anatomy he had ever seen. Thus, we began our journey into the world of CHD.

Our son was moved immediately to NICU for support during his wait for transfer to LeBonheur Children's Medical Center for heart surgery.

His diagnosis: HRHS: TA, TGA, COA, ASD, VSD

He was missing his tricuspid valve. His aorta and pulmonary artery were switched. He had a narrowing in his aorta. He had two holes; one between the top chambers and one between the bottom chambers. His right ventricle was hypoplastic, or very small-nearly nonexistent.

Over the next nine weeks, there were many highs and lows. Two closed heart surgeries; two pacemaker implant surgeries; almost going home; pneumonia; staph infection; sepsis; organ failure; and finally, removal of life support.

I remember it like it just happened. Can it really be fourteen years ago???

I remember the sadness, anguish, numbness, and yet, strangely, the lifting of that incredible weight I had been carrying during those weeks...

Those nine weeks were some of the very longest weeks I've lived. I learned a lot about myself during that time.

I can. I am strong. I will remember-always.

I am the person (and the mother) I am, not because of his death, but because he lived!

2006-11-03T14:21:00.000-05:00

Our story begins in Hawaii where my husband, Jason, and I were stationed. I found out I was pregnant right after Jason left to train cadets at West Point. He came home when I was almost five months pregnant.

I had to go to my five month check up without Jason. I found out we were having a boy. We already knew in our hearts that it was a boy. We even had a name picked out, Kael(mighty warrior) and Keoni, (John). The x-ray tech was unable to see everything due to the way Kael was positioned and I was asked to come back to make sure that everything was ok. Jason and I went back a week later and had the same x-ray tech. She noticed an arch was missing from Kael’s heart. She brought another tech in to make sure she wasn’t overlooking anything. Still unable to locate the arch, they called the head of OB. Kael was getting pretty irritated that so many people were disturbing him. He kept kicking the scope. That was our first sign he is a fighter.

The Ob finally looked at us and said he was going to send us to a pediatric cardiologist where he can use an echocardiography. At this point Jason and I just looked at each other. We had no idea what a echocardiography was. I was getting nervous.

We went to meet Dr. Mahnke, who explained that he and his associate would look at the echo and talk amongst themselves and afterwards he would explain everything to us. I remember that day so clearly. Dr. Mahnke brought us in his office which was not a good sign and especially not a good feeling. He preceded to tell Jason and I that Kael has a Congenital Heart Defect or CHD. CHD affects 1 in every 115 births each year. Kael’s particular defect is complex and rare, known as Double Outlet Right Ventricle, (DORV, both aorta and pulmonary artery arise from right ventricle), type Taussig-Bing,(a rare type of DORV that also includes a Ventricular Septal Defect or VSD-a hole between the two lower chambers and Transposed Great Arteries-the aorta and pulmonary artery are flipped flopped), and Pulmonary Stenosis, (a narrowing in the pulmonary artery. DORV accounts for less than 1% of all Congenital Heart Defects and Taussig- Bing accounts for only 8% of all DORV.

I would later learn that to even give the diagnosis while still in the womb is a miracle in itself. Dr Mahnke wanted us to come back in 3 weeks to make sure his diagnosis was correct. Jason and I were shocked, speechless and in denial. I wanted to believe we would go back in 3 weeks and Dr Mahnke would say he made a mistake. I really prayed and believed that God would take care of us. God did take care of us, just not in the way I originally hoped.

We went back 3 weeks later and heard the same diagnosis. Kael would have to have at least one open heart surgery to correct the defect and his recovery time for this procedure usually is 1 week to a few months. We would have to go to San Diego because Hawaii does not have a facility to handle that type of care. Dr. Mahnke gave us two other choices, We could abort or we could choose not to have surgery; take the baby home and let him pass on his own. We never considered either of these options. However, at that moment it hit me and my whole world changed. Our lives would be completely different.

We told our good friends in Hawaii, and something Mandy said has always stuck with me. She said, “ Maybe God choose you guys to do this because he knew you could handle it.” She made me realize that this was God’s plan for not only Kael, but for Jason and I too. Instead of praying for a miracle, I started praying for guidance. To be honest, I wasn’t ready to learn more about Kael’s particular defect, I just wanted to know what we needed to do to fix it. I started doing research on children’s hospitals, especially on Vanderbilt in Nashville, TN because that is where my parents and a lot of friends live. I knew we would need lots of support. I sent the info I found to Dr Mahnke and he took leave to fly from HI to TN to find out even more information. It is one of the best hospitals in the country and Dr Mahnke told us it was a great choice.

Under the assumption that we were only going to be gone for 2 or 3 months, we left all our belongings and our apartment in the hands of a good friend. We left Hawaii when I was 7 months. Kael was born at 41wks. My delivery...well that is a whole other story. Kael spent 8 days in Neonatal unit and had his first open heart surgery, (arterial switch, closure of the vsd, and fix DORV), at 8 days old. His surgery lasted 8 hours; it was by far the longest 8 hours of my life, and I know Jason’s too. Even though we were educated on what a child might look like after surgery, NOTHING will ever prepare you for seeing your child for the first time after an operation like that. There were tubes everywhere, attached to all parts of his tiny body. His skin was gray and his body swollen with fluids. His incision was still very fresh. There were monitors beeping, but the room is so quiet and still. It is the worst feeling to know that your child had to endure this and there was nothing you could do to change it. I have never felt so helpless.

Kael was only in intensive care for 3 days and then moved to his own room. He was doing awesome. We stayed in the hospital for a total of 3 weeks. This was longer than expected but, Kael had also been diagnosed with urinary reflux where urine splashes back into his kidneys which caused him to have a urinary tract infection.

After his release from the hospital, we were told that Kael needed to stay close to Vanderbilt for monitoring in case another surgery was needed. During this time, we found out that Jason was to deploy to Afghanistan. At once we got together letters from Kael’s surgeon, cardiologists, social worker and even the Chaplin at Ft Campbell to state the importance as to why Jason needed to be here for Kael and I. Jason was told he would receive a compassionate reassignment to Ft Campbell which is 45 minutes from Vanderbilt. When Kael was 5 weeks, ( only home for 2), Jason left for HI to gather our belongings and ship them to TN. He was only supposed to be gone for 2 weeks . When he arrived in Hawaii, his Platoon Sergeant informed him that the compassionate reassignment did not go through. Instead, he would be deployed to Afghanistan with the sniper/scout unit for a year. Jason immediately had to put all our furniture in a storage unit and send me the car since we hadn’t had one since we got to TN. Just like that he was gone. We didn’t get a goodbye or anything.

Kael was in and out of Doctors’ offices from the time that we left the hospital. At 4 months we went in for a checkup and did an echo. His pulmonary artery looked like it wasn’t growing. This was something that Dr Kavanaugh, (Kael’s cardiologist), had been watching for. Kael needed a heart catherization to determine how severe the pressure on his right side actually was and to determine how soon he needed to have surgery. One thing was certain , he would need a second surgery. Dr Kavanaugh told me I needed to Red Cross Jason immediately to get him home.

Jason was unable to get back for the heart cath that showed we could not wait very long for another surgery. I sent two Red Cross messages to Jason in Afghanistan. His Platoon Sergeant told him he wasn’t going to come home even though before he left he was told he would be able to get home if he needed to be here. I felt Jason needed to be here. Kael needed him here, I needed him here. I decided to take action. I contacted two TN Senators and one LA Senator. These Senators contacted Congress. It literally took an act of Congress to get Jason home.

Kael had his second open heart surgery, a patch placed on his upper Pulmonary artery, at 5 months. One would think it gets easier seeing your child in that condition. It doesn’t. Jason was able to be there for the surgery, but had to leave while Kael was still very sick in the hospital. During the stay at the hospital, another heart cath was performed because there was still pressure in his right atrium. After the cath, Kael became extremely ill. He was dehydrated, had large amounts of bloody stools and was throwing up blood. Even though I had family and friends there for support, I was mostly at the hospital by myself having to make decisions that could affect whether my son lived or died. For the first time I realized that the two most important people in my life were literally fighting for their own.

At this point, the cardiologist didn’t know at what to do. GI doctors came and ended up doing a colonscopy and a upper GI to try and determine why he was having bloody stools. Essentially, they told me he was allergic to milk. Kael had one open heart surgery, one heart cath, and a colonoscopy all within a week and a half. That is a whole lot for one tiny body.

After that scare at the hospital, I had to work extra hard to get his weight up. I did not want a feeding tube in him. I felt he had gone through enough and we knew he would probably go through more. I couldn’t put him through another trauma. I would wake up every hour at night because he would eat better when he was half asleep. We continued seeing doctors regularly. Unfortunately a common cold for a heart baby can become something very serious. But for the most part, Kael was doing pretty good.

We started food therapy when Kael was almost a year old. He didn’t want to eat real food, but at the same time we didn’t want him off of his high calorie formula in case his weight dropped. I never knew a toddler that didn’t want to eat a cookie.

Kael had his next procedure at 15 months. He had another heart catherization. Kael’s lower left and right Pulmonary artery were not growing and the patch from his second surgery was leaking, causing blood to back up in his tricuspid valve. He also had a medium size residual left from the VSD that was unable to be reached during his first surgery. The cath was just supposed be used as a tool to gather information so the doctors could determine Kael’s third surgery. By a miracle, (God has provided us with lots of those),the doctor who performed the cath was able to get a stent placed in Kael’s lower right PA and this stopped the back up to his tricuspid valve. Although the stent will have to be replaced as Kael grows, we are hoping we could do more caths than having him go through so many open heart surgeries. This was definitely a blessing from God. Jason was to come home three months after Kael’s procedure. It is always better when he is home.

Kael is now a little over 2 yrs old. He has successfully completed food therapy a month ago and is eating everything in sight. His weight is still an issue, but we are monitoring it and he is on a high calorie diet. I think Kael has officially seen almost every kind of doctor there is and is getting better at having to go. He acts like a normal two year old and at this time is not behind on any of his fundamentals. He has been through a lot of obstacles and unfortunately his battle isn’t over. We are currently waiting to replace his stent on his right lower PA and eventually we will have to put a stent in on his left lower PA. Kael will also need a valve replacement on his upper PA, but Dr Kavagaugh is trying wait as long as we can. We don’t know what the future holds. The surgery that corrected Kael’s heart was first successfully done only a little over 20 years ago. That is all the information we have. We do know this is part of not only Kael’s life, but mine and Jason’s as well. Kael will continue to see doctors for the rest of his life. We continually pray that research and technology will benefit Kael and all the other children born with CHD. It is important to create awareness for these children. Kael brings joy to our lives every day. He is a gift. I have learned more from my son than anyone else in my life. I’m amazed by how often life is taken for granted after watching my child endure something like this. Each day is special. Each day has meaning. What a blessing God has shared with us.

2006-11-01T09:51:00.000-05:00

Three years ago, March 11^th, I met the most beautiful person I have even known. Her name is Kiah Grace, she is my first born, my daughter, and now she is in Heaven. This is her story, her life….

Kiah, derived from a Native American name meaning “Rare beauty”, Grace, her middle name “a gift from God”. That is her name, this angel I speak of.

I remember the day I found out I was pregnant like it was yesterday. I was thrilled beyond words. My husband and I had planned for the pregnancy. We wanted a child and we were about to have one. We did all the things that new, first time parents do. We bought all the pregnancy books we could; we bought maternity clothes even before I gained a pound! We found a good doctor and began out prenatal appointments. It was during a routine sonogram that we found out we were having a little girl. I was so excited. I wanted a girl so badly…A girl…I let the words sink in. Liver, check. Lungs, check. Fingers and Toes, check. Eyes, check. Heart…umm….she won’t turn over. They needed to see the other side of her heart and we would need to come back in two weeks. No big deal…I was having a girl! A girl…I called my mom right away. I am having a girl. Pink dresses, pig tails, cute shoes…

Then it happened, our world shifted, it did not fall apart but it took a significant turn on its axis. Enough to shake you. We were at the doctor’s office. They were looking this time specifically at the heart. “Humm”….said the tech. “What”, I said…she said “just a minute, I need to get the doctor”….it was like a movie scene. I remember everything about that moment. What I was wearing, what the room looked like, smelled like. How small I felt on the table. That was the moment we found out there was a problem with our baby girls heart. They could not tell us specifically what the problem was, just that there was one. They referred us to Children’s Medical center. We went right away and had a fetal echocardiogram…an Echo as it is referred to. That is where we learned the name for our baby’s problem. She had Pulmonary Atresia, a congenital heart defect. Her pulmonary valve had failed to open. It was serious they told us, and she would require immediate attention, surgery, probably several. How do you handle that news? What do you do now? I was crushed. Angry, confused and sad, so very sad. We armed ourselves with information and did research, asked a ton of questions and saw our cardiologist often. We prayed and prayed. We got her room ready for her arrival. We had baby showers, and parties, and shopped until we could shop no more. We were having a baby, a girl and she would be born with a serious congenital heart defect.

Kiah was stubborn from the get go! She was due March the 5^th, but did not come. I had a failed induction on March the 8^th. Go figure, a failed induction, how can that happen? My mom and sister came to Dallas thinking they were having a Granddaughter and a Niece…no such luck. The doctor sent us home. We tried again on Monday, March the 11^th. Kiah Grace was born without complication at 7:12 pm. A beautiful, head full of hair, baby girl. I got to kiss her. That was all. Off she went.

The next few days were a blur of tubes, wires, consent forms, oxygen, nurses, doctors, exhaustion, and emotions I never thought possible. We watched our baby being poked and picked and prodded. It was emotionally draining. Kiah had catheterization after catheterization trying to get her pulmonary valve to open. It kept failing. It seemed that surgery was the next option. A BT (Blalock-Tausig) shunt was put in her heart at four days old. She did great, came out like a champ. We were moved to a private room at Children’s…it was like the Ritz to us. We were discharged from the hospital 3 weeks later with medications to take, things to watch for, and parenthood staring us in the face. We were going home. What a joyous day that was!

Finally at home! WOW!!! No nurses, no doctors, no tubes, no wires. We were wire free. What a feeling! Not connected to anything. We did the new parent thing. Got up every few hours, worried over everything…was she eating enough, was she sleeping enough, was she too hot, too cold, was she breathing ok? The things new parents worry about were only heightened; we had a baby with a heart condition. But we listened to our gut and followed our instincts, we got into a groove, and it was wonderful.

And then it happened again, my world shifted. Kiah was about 4 ½ months old, she was not eating, her diapers looked strange, and she was breathing hard. We took her to see her cardiologist. In the clinic they determined she had Endocarditis, a bacterial infection was growing in her heart. They admitted us there on the spot. Tests, tests and more tests. Major antibiotics and emergency open heart surgery to remove the infectious growth were just the beginning. It was happening so fast. My baby was very sick. Kiah had quit eating all together and required a NG feeding tube to be placed down her nose so that she could get some nutrition. Was she gaining weight? Not enough feed her more. Wait, she threw up. It was awful. We were in the hospital forever! Finally, a month later were discharged. But not before we were set up with home health care. Kiah had to go home on one of her antibiotics; I had to learn how to administer it in her IV. We also had to learn how to place her NG tube. She was still not eating. We did learn and we did go home. And again, it was wonderful despite the feeding tube, the IV, and the medications. We went along fine with lots of checkup over the next several months. But Kiah’s oxygen level in her body was low. When they removed her infection they had to remove her pulmonary valve and discovered that her shunt had closed off. She needed a repair.

We went back to the hospital in November of 2002, Kiah was 9 months old. This was her 3^rd heart surgery. The doctors performed a banded Glenn shunt. Essentially they re-routed her blood. I remember walking into her ICU room after surgery and she was sitting up in bed, smiling. It was as if I had a new child. She felt so good it was written all over her beautiful face. We were out of the hospital in 7 days, a day before Thanksgiving. What a wonderful thing to be thankful for!

The next year and a half was filled with normal, wonderful things. We went places, we did things, she grew, learned to walk, talked up a storm! Had good check up after good check up. She got normal colds. She painted and colored. We celebrated her first birthday, Easter, summertime, Christmas, another birthday, another summer. We went on wagon rides in the “forest” as she called it. We graduated to a “big girl bed”. We were potty trained and wore “big girl Barney panties.” We sang songs, we danced, and we rolled around on the floor. We were happy, we were a family, we hoped.

And then again, it happened my world shifted. Kiah began to tire easily. She was coughing all the time! Her lips were bluer than normal, she lost her appetite, and she slept more than usual. Again we took her to her cardiologist; she was diagnosed with Pulmonary Vein Stenosis. Her veins were narrowing. Surgery was the only option. We had our fourth heart surgery September 7^th 2004. The first in almost two years. I could not believe, or did not want to believe that we were back there. But we were and Kiah did great, she always did. We recovered well and went home in a week’s time. Things were good the first few weeks home. She seemed better, but she was not herself. She coughed all the time! We consulted our cardiologist who referred us to a lung specialist. We tried medications, breathing treatments. But her coughing persisted.

Monday November the 8^th is a day that will forever be etched in my mind. We left home in a whirlwind. Beds unmade, Kiah’s pj’s on the floor. Her toothbrush wet on the bathroom counter. We were going to be late for her pulmonary appointment. November 8^th was the last day Kiah was at her own house, it was the last day she saw her own room, slept in her own bed. We were once again admitted to the hospital. Tests were run to rule things out, rule them in, just to try and figure it out. Weeks went by, Kiah would seem better, than worse. We were in limbo. Ultimately it was discovered on November 29^th via catheterization that her Pulmonary veins were narrowing again, that her upper left vein had closed altogether. One of our doctors stood with us outside recovery and explained to us that Kiah would require a lung transplant and probably a heart transplant. That part of her lung was already dying. I remember thinking that is the worst thing that could be happening. That this was the worst.

We returned to our room on the 8^th floor at Children’s, a place we had grown accustomed to. It was late about 10:30-11:00 that night; Kiah was in and out of sedation. Trying to wake herself from her drug induced sleep. My husband was there, he was getting ready to go home. The doctors were in and out, the last breathing treatment of the night. The last of her meds for the night. The fellow checked on her, her oxygen level was so low. Her pulse ox box read 65%. She was agitated and I just wanted them to leave her alone, to let her sleep. Finally they all left. I was on duty that night. Dad was getting ready to go home. Kiah called out to him, “Daddy, I love you,” she said. “I love you too Kiah, I will see you tomorrow, he said”. And he left. I was settling in. Checked on Kiah, covered her up, read her pulse ox box, it had become my best friend and my worse enemy. I remember thinking how low it was reading. I lay down on the plastic couch, my bed for the night. Kiah called out to me. “Mom”, she said. “Yes”, I replied. Again. “Mom”, “Yes, honey, I am right here,” I said. I was listening to her breathing, her oxygen tank whispering in the night. It was so soothing. I was so tired. I closed my eyes.

And then that thing happened again, only this time my whole world stopped. It shattered into a million tiny pieces. Kiah had stopped breathing. In rushed the doctors and nurses, I was panic stricken. Someone called my husband who had just gotten home. They got her breathing again; they intubated her and moved us to the CICU. I remember thinking thank you God. I called my family and told them that Kiah was sick and they needed to get here as soon as possible. They worked on her for hours. Oxygen, nitrous oxide, medications, tubes, wires, and IV’s. I remember the moment it hit me, that my life was never going to be the same. The nurse had come over to Kiah with a flash light and was going to check her pupils. I stayed right there, watching, bent over my baby’s head. The nurse flashed her light into Kiah’s dark brown, beautiful eyes and I knew. I knew she was no longer in her body, that her spirit and soul had left her body. That the person I had come to know and love more than anything in the world was gone from me.

My baby, my first born, my daughter, Kiah Grace. She left a mark on this world like no other. She is my joy, my reason, my purpose. She is my angel and I miss her.

I love you Kiah.

Your Mommy

2006-10-31T08:14:00.000-05:00

Aidan was born on August 18, 2004, with an undetected heart defect. He was our first born, a beautiful and what we thought healthy baby boy. At the hospital my husband and I had some concerns about Aidan and questioned; his non eating habit, color and coldness of skin, we were told of a murmur they heard and that they would watch it. We were ignored, blown off and treated as "new and over protective parents". Trusting the professionals we took Aidan home. Three hours after discharge is when our lives changed forever! Aidan woke up crying hysterically, as a first time mom I tried comforting him, changing his diaper and feeding him. After a few more attempts and nothing calming him, I called my mom. I began telling her that I thought Aidan was allergic to his formula or something for I could hear gurgling. My morn asked," If that was Aidan breathing?" I said, yes and she yelled, "I'm on my way". I screamed to my husband who was napping that something was wrong with Aidan! Within minutes Aidan's coloring became flush and he had red streaks all over his body. As we were walking out the door to take him to the hospital my mom was pulling up and together we took Aidan to the emergency room. After (our and a half hours of numerous tests, lab work and pokes they still did not know what was wrong with our baby. The Doctor then called the nearest hospital with a Neonatal Unit and it was that Doctor who diagnosed our sons' heart defect over the phone and immediately sent his transport team and medicine Aidan needed to stay alive.

Upon arrival at the second hospital we meet with the cardiologist and were told that Aidan had been "REVIVED" during transport, that he was very, very sick and of his heart defect; Hypoplastic Left Heart Syndrome (HLHS). HI,HS is one of the most complex and severe cardiac defects and remains the most challenging to manage of all congenital heart defects (CHDs). Aidan was born with "hall 'a heart" for his left side (the pumping chamber) was so severely underdeveloped, resulting in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs. If he was a candidate he would undergo a series of') open heart surgeries before the age of three and or need a heart transplant. We were devastated! Forty-live minutes later we were allowed to see Aidan, a sight forever etched in our minds. Our precious baby had so many wires and tubes attached to him, so many lights, monitors, nurses and Doctor's surrounding him. Our priest came and Baptized Aidan and Anointed him of the Sick then he was transported to a third hospital. Aidan was transported to Children's I hospital of Michigan where they were equipped to care for him and his "special" heart. After a week and a half of uncertainty things began looking better. Aidan's test results were coming back positive and he soon became a candidate for the surgery. The Is' surgery, the Norwood was performed on September 1, 2004. Thankfully and Lord willing he was home 2 weeks later. Aidan came home with a feeding tube which he only needed a week also with oxygen which continued until after his second surgery. Aidan remained homebound, only leaving the house for doctor appointments until after the second surgery due to the high risk of infection. Aidan had the 2`1 surgery, the Hemi-Fontan done at ten months of age (normally done between 4-6 moths of age) due to some wheezing and congestion. The Hemi-Fontan was performed on June 16, 2005. Again thankfully and Lord willing he was home 6 days later. Aidan no longer needed the extra oxygen! After a 6 week recovery all restrictions were lifted and Aidan was allowed out into the "WORLD".

Aidan is a thriving, fun, energetic twenty-one months old who loves life and everyone around him. He has the biggest, brightest brown eyes and a smile that will light up any room. Through Aidan's eyes and heart we have learned how precious life is; we've learned to love more, give more, be more patient and are definitely more faithful. We live one day at a time and do NOT take anything for granted. Simply put, we have become better people! Although we would never wish this journey on anyone we do NOT regret the lessons instilled within us. As proud, honored, dedicated and determined parents of a child with a heart defect it is our responsibility to do whatever we can in fighting for the cause. It is very important to our family that we tell the world about Aidan, our "MIRACLE", hoping to raise awareness about congenital heart defects.

Raising awareness is important on many levels-it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the public about symptoms of CHDs and possibly save lives. Aidan showed several symptoms of having a cardiac problem and his little body was going into shock before being discharged from the hospital.

HLHS is not correctable but can be treated with the series of three reconstructive surgeries or heart transplantation. The surgeries have been around for about 26 years or so and with medical technologies and advancements improving every day, that alone gives Aidan, his heart buddies and us; HOPE. Aidan will require lifelong follow-ups by his cardiologist, will require some heart medications, may also be at risk for an infection on the hearts valves (endocarditis) and will have to take an antibiotic such as amoxicillin before having any dental work done and certain surgeries to prevent endocarditis. Aidan will never participate in any physical contact sports; will always have to be careful of hard blows to his chest and be more careful throughout the winter months of simple illnesses such as the common cold or flu, for it could hospitalize Aidan causing more work on his heart. We wash our hands a lot more and use a lot of hand sanitizer as preventative measures! Overall, it is expected that children with HLHS, will have a good quality of life: have friends, play, and go on _just like other children. Aidan will have the 3rd and we pray final surgery, the Fontan June 27, 2006. My husband and I were again blessed this past September 30, 2005 with our second baby, a beautiful and this time healthy baby boy we named Gabriel.

First and foremost thank you God for blessing us with your gifts. Many thanks to our family; friends, co-workers and to all the heart families who have shown us so much love and support. We love you all and appreciate all you do for us. To all the wonderful Doctors, Specialists, Nurses and Staff who care for Aidan, Thank you. We hold each of you in our hearts for you're such a part of our family and our lives. Thank you for taking such great care of Aidan with your love, care, concern and most importantly your knowledge and wisdom.

Aidan, we love you and are so very proud of you, always be strong, fight hard and never give up.

-Kristopher & Jamie, Proud parents of Aidan and Gabriel, little brother to Aidan

2006-10-27T10:06:00.000-04:00

Jordyn 05/08/02 - 09/10/04

This is a story of our daughter Jordyn's much too brief life. Jordyn was born on May 8, 2002 at HEB Harris Hospital. She weighed 51b 15oz. She was a beautiful baby girl. When she was born she was rushed to the nursery to have her lungs suctioned, because she had swallowed too much amniotic fluid and her lips were turning blue. When she was 3 months old we noticed that she was not breathing normally. After an incorrect diagnosis of asthma our Pediatrician referred her to a Pulmonologist at Cook Children's Hospital in Fort Worth, TX. He decided that Jordyn needed to have an Esophogram (An Esophogram is an x-ray exam of the esophagus) study and a Bronchoscopy. The results of the first showed that she had Reflux, which she started taking Prevacid, and Raglan for. The bronco showed, that she had a paralyzed left vocal chord and Tracheal Malaysia. Neither of the two diseases should affect her long term we were told, that they would heal themselves.

When Jordyn was about 10 months old a nurse practitioner at our Pediatricians office listened to Jordyn and thought that she heard a murmur. So she scheduled us an appt with a Cardiologist at Cooks. He did an echocardiogram and found that she needed to have a PDA closed and she had a left Coarctation of her aorta. He recommended surgery immediately. We opted for a second opinion, since she was so young. In February of 2003 we met Dr. Ring, who reviewed her files and decided that she did indeed have the problems that the other Dr. had seen. Jordyn had surgery in March and then was under the follow up care of Dr. Zellers. She did so well during and after surgery with no problems at all. In her second day in ICU she pulled out her art line, so they transferred her to the floor. Her second day on the floor she pulled out one of her other IV’s. At that point the nurses consulted with Dr. Zellers and they decided that it would not be long until she could go home. She was such a curious child, she was learning to walk, and so we spent many hours while at the hospital roaming the halls. Once it was time to pull her drain tube out, they were all surprised, she didn't cry at all. Dr. Zellers decided that she should be a poster child for postoperative co arc repair.

Six months went by and we had our post op checkup and all looked good, so we weren't scheduled to return for another year. At her year visit he did another echo, which showed just that her heart was still enlarged, but he didn't think much of it. Maybe there had not been enough time for it to get smaller again. About 9 months ago Jordyn began to have what we thought to have been seizures, she would whine and then just pass out, sort of like fainting. We spent many long nights at the emergency room and numerous trips by ambulance to the ER. No Dr. could ever find anything wrong with her once we were there, because the spells were over by that time. Time after time we were sent home with no diagnosis or treatment. I explained to Dr. Z what was happening and he suggested that we see a Neurologist to make sure that it wasn't epilepsy. We saw a Neurologist at Medical City Dallas, who determined that it was breathe holding. I thought what an odd diagnosis and did not feel that it was valid. That same day we went shopping and Jordyn had one of her spells in the dressing room at Kohl's, this one longer than normal, so we again called for an ambulance and were sent to Cook's. Once there the Dr. called our Neurologist we had just seen and then came back to tell me the same thing. I remember being so angry and frustrated, I didn't feel like they were looking at the whole picture and digging deep enough. As a mother I really felt like there was something that they were missing or something else wrong. So we left again with no diagnosis other than what the Dr. had said.

In July 04 Dr. Z requested another echo to check and see how her heart was doing. To his surprise he found that it was worsening. So he scheduled a catheterization in the lab the following week. The cath showed Pulmonary Hypertension and the pressure in the chambers of her heart were very high. She was transferred yet again to ICU because she doesn't tolerate the sedation well and had to be on the ventilator. She came off the vent the following day and then we were moved to the floor to evaluate her and make sure she was ready to go home. We were waiting on Dr. Barst; a Dr. in New York, who the team had called to get help in deciding which treatment would be the right and most effective for her. Jordyn was sent home with oxygen to wait for news about treatment. Once home things were normal until we got the call from Dr. Fixler, who Dr. Z had transferred us to for care, called and said that Dr. Barst had recommended an infusion pump that would administer prostacyclin. So surgery was scheduled to place the pump the next week. It should be a minor procedure they said, and we should be in the hospital for 5-7 days to see how she takes the medicine.

On the day of surgery I went in with Jordyn alone at 630 am. Jeff was working and my mother was to bring him later, since it was to be since a simple procedure. Dr. Darrell Herman a pediatric surgeon was called to do the surgery. He talked with us and then they took her back at 730 am. This was the last time that I saw my baby girl, the last thing that she said to me was, "I want Cheetos" I remember telling her go with this nice lady, the nurse, and she will get you some. About 45 min later they called me into a room, fortunately by this time, my Great Uncle Bubba was there with me. I kept thinking, oh my-gosh, they are already done, that was fast. I went into the room and a chaplain, and a Dr. and a few nurses joined us, which I thought was very odd. The Dr. said that they were in the middle of administering the first IV fluids and Dr. Herman was scrubbing in, and her heart stopped. I just stood there thinking, ok Jenny they are going to tell you that it started again, and everything is fine. But the news was very bad. They said that they were doing everything in their power to revive her. It seemed like forever and an hour went by and they came back again and said that it had stayed down for 40 min and that they had decided to start her on ECMO. For those who are unfamiliar with ECMO it was explained in brief to me as, a heart and lung bypass machine that allows your heart and lungs to rest and revive themselves. Once they got her started on ECMO Dr. Herman got the line in and they finally got her transferred to the CVICU. Once in ICU it was quite some time until we could visit her due to her being on so much equipment. Finally we were able to go back and see her and, oh my gosh, it was so scary. She had so many tubes, lines, and wires attached to her.

On Thursday the day after surgery they took her down stairs for a CAT scan. It took about 2 hours to get her down and back up, since they had to take ECMO down with them. The results of the scan were good; she had no blockages or abnormalities of her brain as a picture. Then a Neurologist saw her and he said it did not look good because she had no reaction to pain. This was a sign of a major head injury. I just remember I kept praying that tomorrow she would wake up and be fine. Later that day they did an EEG that showed she had some brain activity but not enough to withstand the injury of being without oxygen to her brain for 40 minutes. The Dr.'s kept telling us that her cardiac functions were starting to work for themselves, but they did not believe that she would ever be able to be a normal child again. I prayed and prayed for God to tell me the right thing to do that night. The next morning Jeff and I talked and decided that what we were supposed to do was take her off the ECMO and unplug the vent. This was the hardest decision that I think a parent will ever have to make. Our family and friends all came in to say their goodbyes and we accepted the fact that she was gone the morning that her heart stopped on the operating table.

Her service was beautiful and there were so many family and friends there. It was truly amazing. I have decided to pursue a career in nursing since Jordyn's passing, so that I can one day help ill children. We are grieving and trying to cope right now, but with God's help we will get thru this tough time. She was a precious, special child, which is one of the things that Dr. Z always told me while he was caring for her. Everyone who met her was instantly captivated by her winning smile and outgoing personality. Strangers couldn't help but stop to observe her joyful spirit, and they were usually delighted to receive one of her grins and maybe even a "Miss America" waive.

We would like to thank all of the staff at Children's Medical Center for everything that you did for her. We all know that you did everything in your power to keep her alive. However it was just not meant to be, since it did not work out that way. I would also like to thank our friends at Heart 2 Heart for all of your continued support in our time of need during and after. We will always remember and love our precious little princess Jordyn Cathryn Turner.

During all of her two years Jeff and I worked full time rotating time off to be with her when she was ill or in need of us. Our parents also took off work some to lessen the burden that was placed on our shoulders. Bills were hard to pay at times and we sacrificed many things for her care and treatment, but she was the most precious thing and we would have done anything possible to make her happy. I had wanted to go back to school right after she was born, but that was not possible due to her being ill and me having to work full time to make ends meet. We applied for all kinds of help, social security, Medicaid, food stamps, WIC, whatever we could get and we continually got turned down because we chose to work and earn a living for our family and not live off the government. Somehow we managed through this tough time that wasn't easy at all, but when you walk with God, I believe he makes all things possible.

2006-10-24T10:59:00.000-04:00

Our heart story involves our entire family. I have a son, two sisters, and very likely a deceased aunt that have all been diagnosed with Tetralogy of Fallot. I also have a 1-year old nephew who was born with a patent ductus arteriosus.

My son, Killian, is 2 years old and has already been through two open-heart surgeries, 5 cardiac catheterizations and has another surgery planned this summer; he will likely have additional surgeries and catheterizations in the future. Killian was diagnosed at 20 weeks gestation, at which point we researched every hospital in the nation to decide where to have him treated. We discovered that our local hospital, which at that time was Vanderbilt University Medical Center, was a top notch children's hospital, and he has had all of his procedures done there. Killian has never gone for more than 6 months without having a cardiac procedure. Despite his constant procedures, he is an otherwise happy and very-healthy looking child. He has not yet developed a fear of doctors or hospitals; he actually enjoys the hospital because when he is there he gets whatever he asks for, usually movies, donuts, and ice-cream.

Two of my parent's seven children were also born with Tetralogy of Fallot as well. These are my two sisters, who arc now 46 and 44 years old. Both have had complete repair and now have children of their own, none of whom have heart defects.

The older of the two sisters, Anne, was diagnosed when the doctor realized she had blue spells and a heart murmur. Her condition is similar to my son's; both of them have smaller arteries that have been difficult to repair. She had a shunt installed at age 3. During her next surgery at age 8, the doctor's came out of the operating room to tell my parents that it was too risky at that time to undo the shunt and patch the hole because of the narrow pulmonary artery. She was born at the time when doctors were just learning how to fix this defect. Later, she had a complete repair when she was 15; two years ago she had an additional surgery to fix a leaky patch, widen her pulmonary artery and install a new pulmonary valve.

The younger of the two sisters, Julie, was diagnosed very early in her life and had a complete repair when she was 3. She has never had any negative effects or required additional surgery. She continues to visit her pediatric cardiologist repeatedly with no problems.

After Killian was born, my family did some detective work and discovered that I had an aunt who died when she was 3 weeks old. We do not know the exact cause of the death, but the medical records state that she was a "blue baby", which signals a heart defect.

Just last year, we had another heart defect in our family. My brother's son, Gavin, was diagnosed with a patent ductus arteriosus. He was told to wait six months to see if the patent ductus arteriosus closed on its own. Luckily, it did close on its own and Gavin has had no other cardiac difficulties

Given the large family history of heart defects in my family, we have spoken with many doctors about enrolling our family in a genetic study. We have talked with doctors at Vanderbilt Children's Hospital and they arc in the process of setting up such a study. Our family would love to find out if there is some gene that we carry that is causing these heart defects. It would be helpful for m_y son, my nieces and nephews, and all their future children if we were able to find the gene and precise mutation. Given the high rate of heart defects in my family, my wife and I have decided to postpone having additional children until we know more about my family's medical history. Although we do not regret having Killian, we do not know whether we have the strength to face the risk of having a second child with a heart defect. We have chosen to pursue adoption, but even that option is difficult to pursue because we still are uncertain what lies ahead for Killian.

Killian still has very small pulmonary arteries and will have a conduit valve inserted to replace his left artery, and further work to enlarge his right artery in a surgical procedure this summer at Riley Children's Hospital in Indianapolis, Indiana. We have two children's hospitals collaborating on his medical care because although we now live in Indianapolis, we continue to travel back to Nashville for his catheterizations. We hope to someday reach a point where Killian does not have to have a cardiac procedure every six months. Although it has not been an easy road, having a child with a heart defect has taught us many things about ourselves, and about our inner strength, and shown us how lucky we are to have such supportive and helpful family and friends.

2006-10-23T09:15:00.000-04:00

Hello my name is Lisa. I am the mother of Lenora born Oct. 2, 2003. She was born with a CHD. Her CHD is Aortic Stenosis (AS); the narrowing of the heart valve. After her check up by the pediatrician he told me I needed to take her to the cardiologist specialist in Springfield, MO. The first visit seemed like forever. After the doctor came in and told me what she said he then told my Mother in Law and I this could be terminal. Dec. 19, 2003 she had her first Cardiac Catheterization (cath.) then her 2nd one again in Feb. 25, 2004 both of these in St. Louis. Between these appointments were visit's to Springfield to the cardiologist once a month, or every 3 weeks. In Aug. of 2004 she had her first open heart surgery at Children's Mercy Hospital in KC, MO; again followed by month visits to Springfield cardiologist. She then had her 2nd open heart surgery in May 23, 2004 yes about 7 1/2 months later. She has had 2 other cardiac cath's during this time the 3rd one April 11, 2005 and the 4th one was Dec. 22, 2005. She is scheduled for a 3rd open heart surgery. I thought the hordes thing in my life was watching my mother die in front of me, this has got to be one of the worst things I've dealt with being a mom. Both surgeries she had something like a glitch ( that she is known for her in surgery for her to do now) that makes your mind race and do the what ifs. She is the 3rd child of mine and my last child. It is so hard to describe to someone that is not a mother of a CHD child what we mom's go through on a day to day basis. You go through the "did I do something wrong when I was pg? "Why is this happening" "will she be 'normal'?" Will she be able to be in sports and gym? My best thought right now is that "I hope none of this will affect her when she's in school". Finding a baby sitter other then a family member is hard to do. Not most people want to take on a "baby' with a heart problem there scared to watch her"_ The Aortic Valve Stenosis the narrowing of the valve between he left ventricle and the aorta. The narrowing makes it difficult for the heart to pump blood to the body and can result in an enlarged heart and ultimately, heart failure. After several catheterization procedures to see how restricted Lenora's valve was, doctors decided to relieve some of the pressure in t he heart chamber to make it easier for her heart to work. The way it was described to me was the top part of her heart had 2 times as much pressure as the bottom. The surgeries will even things out. Both of the surgeries were where they took the sub aortic membrane out. The first surgery was the only surgery she was to have. Obviously they were wrong and she did the 2nd one to take the flap back out and to do a Doty procedure. The Doty procedure is where they put a pair of "pants" on a valve to get it to open up it was made of man made material so we didn't have to worry about any type of rejection. The American Heart Association (AHA) chose Lenora to be the heart walk child for the walk on April 22, 2006. 1 would love to be able to go somewhere for a few hours and "forget" about things. It's hard to go somewhere and not think "wonder if she's o*?", "is she running too much?" The little questions everyone takes for granted I continually ask myself all the time. Yes she goes to my stepmother in law and father in laws house but that doesn't make it "go away". I call and check and it's a little easier letting her go there, but its still hard. We have basically put our lives on hold to get her through all this. We don't have the chance or opportunity to set a date slot of times to set operations or procedures up. It's you need to be there on this date and this time_ It's not something we can plan on and save money up for and when your stuck in a hospital for a week or longer at a time with the most stress in your life it weighs on you_ Your worried about how your child is doing in surgery/procedure. Wonder what kind of restrictions will be put on them this time. My dream vacation or day off would of been that cruise with Kenny Chesney in a beach concert with like 5 people. I have that set in my mind and day dream about it when were at the hospital just waiting and waiting. I wouldn't give anything to not stay here with Lenora. Yes it's a lot of stress, and it wears on you, but if you go somewhere w/o her then you are continually thinking of the shoved mentioned questions. She can't do the "fun" things all other 2 year olds can. No rides at the fair's that are in town, or grandparents wanting to take them to Branson. She can't be outside when it's to hot. On top of her heart problem she has eczema. The poor little thing can't win for anything. At this point she is to be limited on wrestling, football, there's like 4 things she has to limit. She can't have chocolate, or caffeine; can't fall on her chest. Most definitely no sunburn to that area of her chest. She has a bed in her own room, but I don't feel comfy enough to let her sleep in it by herself_ If I can't feel her and feel her breathing she's not close enough. I want to be able to role over and feel her breathing when I touch her tummy. I can't tell that if she's in her room in her bed. She breathes so shallow that you can't tell till your "on top " of her. It's easier to just touch her. I have had a sudden change in the last 2 1/2 yr., you don't know when the "time is up" you have to take your time everyday with a CHD child. We live the same as everyone else, just with different rules, ascpects of life with a CHD child. You have to be able to attend to that child as well as your other children and not spend all the time with the CHD child. It’s not that a CHD child is spoild or anything. Lenora get’s A LOT of attention but I’ve been trying to get awareness in our community too and using the local newspaper to do that.

2006-10-20T08:13:00.000-04:00

Megan

Megan, our first child, was born on August 17, 2004. Immediately after birth every thing was just fine with Megan. We were told that she passed all of her tests and was a healthy baby. Our families got to spend some time with Megan, and then we had to move up to the nursery floor.

Once on the nursery floor, the nurses took Megan and said that they were going to get her warm and give her a bath. We were told that they would bring Megan back in an hour or two. When it was getting close to the two hour mark, we were just about to check on Megan. We never got the chance to do that. A doctor entered our room and told us that they noticed a heart murmur on Megan. He said that they wanted to take blood, do an EKG, a-chest x-ray, and run some tests to see what they thought could be wrong, if anything. While this made us nervous, we still were thinking that it would not amount to anything. We called our families just to let them know. Well, a few hours later, the first doctor came back, along with a few others, telling us that they believed that something was wrong with Megan's heart. Her oxygen level was low and they were concerned about that. They said that they spoke with the doctors at Children's Hospital in Pittsburgh, and that it was necessary to transport Megan by medical helicopter to the hospital.

This was the first piece of terrible news that we received over those next few days. We could not believe that our tiny little baby who was just a few hours old, was about to be taken away from us. We also could not believe how much danger she was in, and couldn't accept the fact that we could lose our brand new baby girl.

Once at Children's Hospital, we were told that Megan would have to undergo a cardiac catheterization to determine exactly what was wrong with her heart. She was also placed on constant oxygen, and eventually a ventilator. After going through the catheterization, at which she was only a little over 12 hours old, the doctors diagnosed Megan with the heart defect Pulmonary Atresia. This meant that Megan did not have a pulmonary valve, and that the entire lower right side of her heart was underdeveloped. In order for Megan to live, she would have to undergo open heart surgery.

Megan was just three days old when she had her surgery. She had so many tubes and medications hooked to her tiny body that it was hard to just see our baby. Gradually tubes and lines were removed, and Megan would be moved out of the Cardiac ICU and into the step down unit.

We faced our next piece of bad news, which was that Megan was not drinking enough to maintain her weight. She had to receive a feeding tube to assist in her eating. We spent almost the entire first month of Megan's life in the hospital before finally being able to bring her home. She had to come home with a feeding tube, which she had for a few weeks after discharge.

Once home, we faced another new challenge. As first time parents, we had all of the normal fears and concerns that all parents have. But, we also had new challenges to face, that most parents don't have to go through. Megan was on six medications when we brought her home. We had to make her formula a special way and we had to keep her from crying. We had to care for our baby not just as a newborn, but as a sick newborn.

Megan had to continually go to see the pediatrician as well as the cardiologist for checkups. They would monitor her weight gain as well as her heart function.

Just a few months ago, when Megan was eighteen months old, she underwent another cardiac catheterization. During this catheterization, they were able to close a shunt that they had placed during her first surgery, and we were told that the underdeveloped part of her heart had grown. This was wonderful news, because it meant that Megan wouldn't need more surgeries until she is older. When Megan was a newborn, we were told that she would need at least three surgeries to repair her heart by the time she was three. Currently, we are looking at not needing more surgeries until Megan is older, when she would need her Gortex valve replaced.

This journey has been filled with ups and downs, and still isn't over. It is our hope that more awareness will be place on Congenital Heart Defects in the near future. While pregnant with Megan, a heart defect wasn't ever a concern. We had our routine ultrasound and everything looked fine, although most ultrasounds do not show the chambers of the heart in detail. There is so much focus placed on other birth defects, but never on heart defects. We hope that by seeing just how many lives our affected by this that you will help to make our cause more known. If the detailed ultrasounds became the routine, and not just used when there is concern, then parents would at least be able to prepare themselves for the journey that follows a child with a congenital heart defect.

The past two years have been extremely challenging, yet so rewarding. Megan has brought so much love and joy to our lives, and we are so thankful that we have her with us today. We hope that by reading her story, along with the many others, it will open your mind to exploring the lives of children with Congenital Heart Defects. Thank you for taking the time to read our story.

Sincerely,

Jason & Beth

2006-10-19T08:52:00.000-04:00

My son's story starts like others, at birth. He was two days old when I took him home from the hospital and eighteen months old when he was legally adopted as mine. Both were the happiest days I ever experienced. Of course, he was mine before he was born as I used to talk to him in my car and go to all Dr's visits to see him in the sonograms. Then hours after his birth, I couldn't decide between two names and when I said them to him he moved his head to look me straight in the eyes at the sound of Noah.

My, was he a challenge! He had colic and never slept well. He was very determined and independent. I was always on my toes. His first word was "ball" at seven months, he crawled at 8 months, and walked at 9 months. That's why at 2 years old in August 2001, he seemed to be limping, I knew something was wrong. He sat in my lap for hours. An X-ray showed nothing wrong. It seemed to go away but then a couple weeks later he limped again. Pediatrician again said nothing was wrong, maybe just a virus that manifested itself in his joints and to give him Tylenol. Again, it seemed to go away.

In September 2001, Noah was sleeping and he seemed to be burning up. I tried to take his temperature but he awoke and suddenly he cooled off. There was no fever. This happened that whole Labor Day weekend on and off. Finally, I knew this was strange and took him to Urgent Care. The Dr. on call there said she noticed a heart murmur and that I needed to get him to Children's Hospital for further evaluation. I took him right there. The emergency room doctor took a blood test and called Cardiology. The fellow on that weekend listened to the murmur and stated that it seemed insignificant and that some children get murmurs that they outgrow. So, again, nothing to worry about. Bring him back in two weeks for a follow up with Cardiology.. .

I could not get an appointment with Cardiology until 4 weeks later but they assured me this would be fine. Now, back home, everything seemed back to normal. Until I received a phone call from the emergency room Dr. stating that Noah's blood culture came back with something in it and he needed to get a shot of antibiotic from his pediatrician right away. The Pediatrician said that he did not look sick and did not want to submit him to a shot so put him on amoxicillin for ten days. Noah seemed to be back on track again until October when he started to have the "weird" fevers again. One more time, the Pediatrician stated that nothing seemed to be significant but make sure I did not miss the Cardiology follow up appointment that was coming up in two days.

The follow up Cardiology appointment started everything rolling. The Cardiologist stated that Noah's heart murmur had gotten significantly worse, not better. They hospitalized him for several days to do tests. Also, cardiology had never received a blood culture report from emergency room so they knew nothing about this factor (First incident of bad communication). They did their own blood test and found strep bovine bacteria in his blood. This is the bacteria that we all have in our mouths but our bodies fight it off, Noah's for some reason did not. Dr's questions were, "did he ever go to the dentist" "did he ever have heart issues before this"? The answer was "no" to everything. We were thrown into a world I knew nothing about. I did not know that this type of bacteria if in the blood stream goes to the heart and causes heart valve damage, but that is exactly what it did. Thoughts circled my mind. How did this happen? Was it when he fell and got a bloody lip? Was it when he ate some dog food that one time? What did I do wrong? My God My Baby-why couldn't I have protected him from this!

After much reassurance that there was nothing I could have done, it was just a freak thing that happened (although several Dr's thought there had to have been something going on with his heart beforehand to have gone directly there so quickly) and the fact that his birth mother kept asking me if I had ever gotten Noah's heart checked because the birth father was telling her that he and his brother had some kind of heart problem when they were younger where they couldn't play football or any high contact sports because if they got hit in the chest they could die from it). Unfortunately, investigations into this never materialized into any further information.

Noah started a regimen of three antibiotics for six weeks given on a strict schedule through a pic line in his upper arm. The cultures came up clear after three weeks but his valve was beyond repair. They needed to do open heart surgery to replace the aortic valve. There was a procedure called a Ross where they take a good valve (pulmonary in Noah's case as his mitral was leaking also) and put it on the aorta then replace the pulmonary with an adult human valve cut to his size. Of course, the human valve since it is not of his body would not grow so would need to be replaced at some point-this could be anywhere from two to sixteen years down the road.

The surgery was successful and Noah stayed a little longer in the hospital than I had expected but who knows at this point what to expect. On a Sat. at 10:30pm, Noah was on the step down floor in his hospital crib receiving his antibiotics when a young woman walked in. She said "you do not know me and this is going to seem strange, but I was sent her by God to give you a message". I thought maybe she had the wrong room but she assured me it was for us, a single mom with a 2 year old named Noah. She put a fist full of money in my hand and said God told her I was in need (and I was, I had just started a new job and had to borrow my vacation time in advance and take a week without pay but how did she know this)? She went on.. ...she said "I was driving in my car when I heard God speaking to me. He told me I had to help you with this money and to let you know that he hears your prayers and he is with you and your son", she said "I am a single mom myself and I have a hard time parting with this money but it is not from me it is from God. I have my daughter, who is waiting right outside with her friends (she is having a sleepover tonight) so I loaded them all in the car and came here after I tried get out of it. But God wouldn't let me not come. So, just know that he is with you." Now in tears, I tried to give her back the money but she wouldn't take it. I asked who she was but she said that wasn't important. She left with three little girls in pajamas. I truly believe she was one of God's human angels and I felt His presence surrounding us.

Now, Noah is six years old. He has leakage at a moderate level at his pulmonary valve and mild at the mitral valve, but has no health restrictions and doesn't take medication. He has an echo once a year. He plays soccer, T -ball, basketball and is very energetic, this has never changed. Sometimes I have days where I get anxious from not knowing how this all happened, how did a bacteria get in his blood, could it happen again, is his cold a sign of something worse? ,,' "but everyday I thank God for the gift of this little boy who has changed so many lives and taught me how strong love and faith can be.

2006-10-18T08:53:00.000-04:00

On May 28,2002, our precious baby girl, Holly, was born. She appeared to be perfectly healthy, and we were overjoyed. Our joy turned to shock; however, as we learned several hours later that Holly was born with a very serious heart defect. Her diagnosis consists of transposition of the great arteries, in which her pulmonary artery and aorta were reversed; a ventricular septal defect (a hole between her ventricles), an ASD (a hole between her atrium); and pulmonary atresia (underdevelopment of her pulmonary valve and artery). She was rushed to University of Alabama - Birmingham Hospital and was later flown to Children's Hospital Boston, due to the severity of her congenital heart defect. Holly had her first open-heart surgery at 10 days old. Dr. John Mayer, Jr. was her surgeon. We got to bring our baby home at 3 weeks old. We knew that she would eventually have to return for another surgery to further repair her heart.

When Holly reached 8 ½ months, we were told that it was time for her next surgery. We were then hit with the devastating news that she had "very little chance" of being a candidate for the Rastelli procedure that she so desperately needed. As her parents, we felt totally helpless. It seemed that there was nothing we could do to help our precious baby. We eventually realized that there was something that we could do for her we could pray for her and ask others to pray. We, along with Holly's grandparents, sent out hundreds of letters asking friends, family and even people we did not know to pray for a miracle for our sweet Holly. Literally thousands of people were praying for her allover the world!

We returned to Children's Hospital Boston when Holly was 10 months old. It was heart wrenching to sit back and watch as our baby underwent EKGs, ECHOs, chest x-rays, blood work, and a heart catheterization. Upon reviewing the test results, Dr. Mayer told us that he was a little over 50% sure that he could perform the surgery, but that he would not know until he got her in the operating room. The surgery that she needed would involve placing a conduit, which is an donor valve and artery, to replace her defective pulmonary valve and artery. We immediately began making telephone calls, sending out emails and Care Page messages asking everyone to pray even harder that Dr. Mayer would be able to perform this procedure.

The night before Holly's surgery, I was rocking Holly in her hospital room while waiting for my husband to return to her room so we could go to the chapel together to pray for Holly. While waiting for him, I had a strong urge to go ahead and go to the chapel. When Holly and I entered the chapel, I noticed someone I thought was a young man wearing a stocking cap and heavy jacket. He was kneeling at the front pew, praying. Holly and I slipped into the back pew, and I began praying for her. The next thing I knew someone's hands were on my shoulders. I looked up and saw that the person I noticed earlier was actually an elderly woman. With a Jamaican accent, she asked if she could pray with us. She put her hands on us and prayed. She said that God would heal my baby through her doctor and that I would go and tell others. After she prayed, she asked if she could hold Holly. She held her for a moment and prayed for her again. As she left she said, "It will be done. It will work." This woman had no way of knowing that we had been praying for something that wasn't supposed to "work". It was as if she knew of Holly's situation. A tremendous sense of peace came over me. I knew at that moment that Holly would be able to have the Rastelli procedure, and that she would be okay. I have no doubt that God sent an angel that night to reassure me and to comfort me.

The following morning was surgery day. The hardest thing I have ever had to do was to hand my baby over to a total stranger and watch him walk away with her. While Holly was in the operating room, we sent out even more pleas for prayers. So many people were praying for her at the very same moment. The feeling that we had when a nurse came out and told us that Dr. Mayer was indeed performing the Rastelli operation was indescribable. Our prayers had been answered, and God gave Holly her miracle! We truly feel that it was God's plan for Dr. Mayer to be assigned to her case. He is a world-renowned heart surgeon and was able to perform a complicated surgery that many said couldn't be done. God has blessed him with tremendous skill, and he has used this skill to save the lives of thousands of babies!

God was with us throughout our ordeal, and we continue to feel His presence in her life.Holly had complications following her surgery. She spiked a high fever (105.3) and developed fluid on her lungs. We again made many phone calls, sent out emails, and updated her CarePage to let everyone know specifically what to pray for. Each time God answered our prayers. There are many risks involved in open-heart surgery, including strokes, heart stoppage, infections, and blood clots. We are very thankful that Holly did not experience any of these.

Just as God had a plan for Dr. Mayer's life, we feel He has a plan for Holly's life and for ours. Upon returning home from Boston, my husband, my parents and I felt the urgent need to establish a foundation to raise money for research for treatment of congenital heart defects. As a result, the Hearts of Promise (formerly known as the Holly Turner Heart Research Foundation) was established in April of 2003. Many friends and other parents of children with congenital heart defects have gotten involved. So far, we have raised $110,000 for very promising research that Dr. Mayer and his team are conducting at Children's Hospital Boston, and we plan to work hard to raise much more. Although Congenital Heart Defects are the most common birth defect, funds for research in this area are severely lacking.

While Holly is thriving now, she will face multiple heart surgeries throughout her lifetime. This is because as she grows, her conduit will not grow with her. Even when she stops growing, her conduit will calcify since it is not made from her tissue. Dr. John Mayer, Jr. and his research team are making advances in the tissue engineering of heart valves and arteries for growing children. These new valves and arteries would be grown from the child's own tissue and could eliminate the need for multiple open-heart surgeries in many forms of congenital heart defects. Since the valve will come from the child's own tissue, it will grow with the child and not exhibit rejection issues.

Holly turned four years old on May 28th. We are so grateful that God blessed us with such a sweet and beautiful little girl. This precious redhead touches every heart she meets!

2006-10-16T10:25:00.000-04:00

We were overjoyed when we found out we were having a baby. Everything seemed to be going fine, we went for an appointment in late May of '03 to find out what we were having. A boy! Then the red flags started to go up. I heard the tech. tell the OB that she could not see all the chambers of Jackson's heart. I got a little nervous, but the OB said that probably we needed to come for an appt. in about a month and they would look again, he would be bigger and maybe he would be rolled a different way and they could see everything. Thinking it would be just a routine visit, my wife went alone. I was outside mowing when she came home and just went into the house.
I went in and asked what they said. She said that they cannot see all of his heart and we were being referred to Vanderbilt. Then came the worst day of my life, we were still upbeat, there was still a good chance that there was still no problem. As the tech. looked, we were all talking, measuring little Jackson, he was a good size, then the room went silent and the tech. asked for the OB to come in the room. He took a look and the next thing I remember is we were being wisked away to a private room to talk. The OB said that there was a problem and we needed to go see Pediatric Cardiology, now! We went over there, in shock. Dr. Kavanaugh did the echo, she looked for a long time, then said Jackson has Tricuspid Atresia, an ASD and VSD. She said luckily there is hope, she explained the whole condition to us, he will require at least 2 surgeries, probably 3. She said we will have him at Vanderbilt, lucky for us, only 20 minutes away from where we live.
At 32 weeks, my wife started to leak amniotic fluid, so I took her to Vanderbilt and she was put on bed rest, steroids started. At 33 weeks, Jackson decided it was time and made his grand entrance. 4 pounds, 15 ounces, 18 inches long, August 5, 2003. He did well and after a week in the NICU he was sent home. We went back for numerous cardio. visits with his new best friend, Dr. Liske., placed on Lasix, Digoxin. When he was about 2 mos.
old, he was getting too much blood flow to his lungs and needed to have a Pulmonary Band placed. The surgery went smooth, the recovery did not. We spent about a total of 2 weeks in the hospital, brought him home only to end up back there a week later with a Pericardial Effusion, they removed 2 ounces of fluid from around his heart at 2:00 a.m. on a sunday morning.
about another 2 weeks in the hospital and home we went. At about 6 mos. old, Jackson went for a cath. to see if he was ready for his Glenn, we got the surprise of our life. A few days later, Dr. Liske called and said that it was decided that Jackson would skip the Glenn and they were going to try and ride him through straight to a Fontan. So, about 1 1/2 years went by, many cardio. visits, and Jackson's body was starting to show signs of low oxygen.
His sats were in the low 80's on a regular basis. So, another cath., I figured they would wait again, but then I got the call that will always remain in my mind, it was time for surgery. Dr. Liske reassured me that this was a good time and Jackson's chances of survival were excellent. Our previous surgeon had since left, so Dr. Liske recommended Dr. Karla Christian, another of the Pediatric Cardiac Surgeons at Vanderbilt. So, I finally asked Dr. Liske if he would have her do a Fontan on his kid and also that Jackson was not only our child, but his too. He said without hesitation and that all his patients are his children, that was good enough for me. So, on Nov. 1, 2005, Jackson went through an 8 hour full Fontan. He did well, so did the surgeon. 7 days later we were discharged, Jackson was playing outside one week post Fontan. He currently is on a baby aspirin and Enalapril. Some time in the next year or so, he will have his fenestration closed. So, for now we are enjoying life, planning vacations( it has been a long time since we have had one) and getting ready for birthday #3.
We feel that as long as we have Dr. Liske, we are in very good hands.
He has always made the correct decisions and gives it to us straight. When he says he hopes it will be many many decades before Jackson needs any other surgeries, that is hopeful. Nobody knows the long term outcome, but we have learned to be thankful for every day.

2006-10-13T10:05:00.000-04:00

It has been 8 years since my son was born with tetralogy of fallot. I just came home from his yearly echo and cardiologist appointment. The news was wonderful. I wanted to contact the surgeon who did Nathan's repair and tell him what an awesome job he did. When looking him up on the internet I discovered that he died in 2000 in defective tire accident. He's name was Dr. Haas. If you know how to contact he wife Heidi, please tell her thank you for all that her husband gave me.

Nathan was born at Arnold Palmer on 8/3/98. I was first told something wasn't right and they would take him to intermediate care for observation. After a few hours I was informed to go and see him because they were not sure he was going to live. The next day and many procedures later, I was told that Nathan was born with tetralogy of fallot. He would need a B-T shunt and later open heart surgery. He weighed 6 lb 6 oz and was 4 weeks early. At 4 day he had the B-T shunt. Dr. Haas said the surgery was tricky because the PDA was on the wrong side. Afterward he coded. Then went home at 10 days old. Nathan had one tet spell in October. The only symptom he had was rapid breathing. No blue lips, fingers, toes, nothing. When we arrived at the ER he O2 sat was 67 %. At home I would massage him before each feeding and he grew rapidly. Originally they said his repair would be around 6 months, but Dr. Haas said he was ready at 3 months for his weight.

The second surgery was awful. I sat beside him for 7 days straight. Dr. Haas did an awesome job. He said that he ended up having to reopen Nathan because of a bleed so the surgery took longer than expected. The nurse said they put the monitors in color because I was a monitor watcher. Just looking at 3 poles full of IV pumps and what looked like jumbled christmas lights made me cry. After about 4 days Nathan woke up and smiled, even with a respirator and IV everywhere. I could not have imagined that he would ever grow up. Dr. Haas' nurse Patty was wonderful, telling me at least 10 times what they were doing and trying to draw me pictures.

Since then we have moved, I have remarried, and Nathan changed from Patterson to Fisher. He has just had his eighth birthday. He never stops. He even jumped the fence in PreK and ran away. His cardiologist says he has no limitations. The best thing was when he looked at me at the appointment today that there was no change from Nathan's echo last year. Looking at his scar he stated whoever did he's surgery did the best he had ever seen. I remember Dr. Haas doing surgery on a little girl and made the scar across instead of down the middle for later. Dr. Haas held my hand during one of the most difficult times in my life and also made my son's life very wonderful. Here is a picture of Nathan now. I wish Mrs.. Haas a wonderful life and thank God for Dr. Haas hands. (Which is a funny thing, because they were so big I asked how he could do wonderful work on little people)

2006-10-11T09:53:00.000-04:00

Hi, my name is Deirdre and I would just like to share my story about my son who was born with a congenital heart defect called Tetralogy Of Fallot!

Joey was born July 7th 2003 via emergency c- section due to the fact that he was breech. He was 9 lbs. and 21 inches. Pretty big! Everything was great (we thought)! We spent 4 days in the hospital together without a problem. His pediatrician signed his release papers the night before we were being released so we would not have to wait around for her the next morning. My husband and my other son, Frankie, were on there way to pick Joey and I up when suddenly the nurse came in and said they were not able to release him because his O2 levels were low. I had no idea what this meant. They said it could possibly be a lung infection and that he was going down to the neonatal floor so they could run test. I was very scared at this point and had no idea what was ahead for us.

About an hour later the neonatal doctor came to my room and said that a pediatric cardiologist (PC) was on his way to the hospital to do an echo because they thought it might be heart related but were not sure at this point! I was so scared now! I feared the worst. Finally after about 5 hours of waiting in that small hospital room dreading what was going to happen, the PC, Dr. Reitman, came into my hospital room and told me that my baby had a congenital heart defect called Tetralogy Of Fallot (TOF) and he was going to need open heart surgery within the week. They were going to be transferring Joey to Schneider Children’s Hospital where they would do some further testing and find the best course of action. I was HORRIFIED!!!! I had never heard of anything like this before and was very scared and in the dark about the whole thing. There was no history of heart problems or birth defects in either my family or my husbands, so this was a very big shock. Joey was transferred that evening and our nightmare began. They ran more tests and did a heart cauterization to get a better look at his heart. We were told this was going to be a 2 step repair. The first open heart surgery would be done now, which would partially repair his heart just enough for him to grow, and then within his 1st year the final repair would be done.

We were so scared. We were told that the out look was good for Joey but that we did have a tough road ahead of us. They were right, it was very tough. On July 15th my baby had his first open heart surgery. He was 8 days old. Seeing him after surgery was the hardest thing I have ever been through. He did fairly well with his recovery. He did have some trouble coming off the vent, and once he was off he had to learn how to feed all over again. We spent 3 weeks in the hospital. We finally brought our baby boy home on July 30th. He did really well after this. We saw his PC every 2 weeks at first and then once a month. He was on a medication called digoxin, which was to keep his heart beating slow and strong so it didn’t have to work so hard on its own. Once we were home from the hospital I went on the internet and searched for information about TOF. I was able to join groups with other mom’s who had children with TOF or other CHD’s, and even some adults who had the defect. I also found Saving Little Hearts which was a great resource for information and support. They even sent us a hospital care package when we were going in for Joey’s 2nd surgery. These groups were so helpful. Even though my family and friends were very supportive and there for us all the way, I finally felt like someone else really knew how I felt and had been down the same roads as I had. I was able to find support and answers to questions I had and even answer some things myself after awhile. It was great having others who had been there. I am so glad I found them.

When Joey was about 10 months old we were told he was ready for his repair. We met with his surgeon and scheduled his surgery for May 5th 2004. Although this surgery was also very difficult at least this time I was well informed about what was happening and what to expect being that I had done it before. He did very well with his recovery this time and we were home in a week. The Drs and nurses at the hospital were awesome and I will be forever grateful to his surgeon, Dr. Vatsia.

Joey is now 3 years old and doing great!! He may need a valve replacement in the future but we are hopeful that it will be able to be done via cath and he will never have to go through another open heart surgery again.

We don’t know what the future holds for all of us but we are so thankful for all our todays.

One thing is certain more awareness of Congenital Heart Defects needs to be raised and more research needs to be done. Heart defects are the most common birth defect, affecting almost 40,000 babies per year in the U.S, and is a leading cause of birth-defect related deaths worldwide. Despite these statistics, there have been few organized international resources dedicated to meeting the needs of the families and individuals affected by CHD. Newborns with potentially life-threatening conditions are not routinely screened. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHD’s and Childhood-Onset Heart Disease. This is due in large part to the lack of awareness most people have about Congenital Heart Defects. Raising national awareness about Congenital Heart Defects is important on many levels it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHD’s and possibly save lives; and it will affirm the need for increased funding to researchers and medical professionals so they can continue their work to improve the outlook for CHD patients.

2006-10-10T03:40:00.000-04:00

Because I was considered to having a high risk pregnancy due to being 37 years of age, I was receiving sonograms more frequently than my previous pregnancies 10 and 12 years prior. I went to an appointment in October 2005 for a sonogram. After about 30 minutes of moving around, getting up and walking, the sonographer asked me to come back again in November for another sonogram. The explanation given to me was that she wasn't getting pictures of the heart that she wanted. You see, my baby was not being very cooperative with getting her picture taken. So I went back a month later for my November appointment. After what seemed to be 30-45 minutes again of picture taking with the sonographer, she went out of the room to speak with my ob/gyn. A couple of minutes later he came in to explain the situation with my baby. It was the first time I had ever heard about Transposition of the Great Arteries and heart defects. A couple of days later, I was heading down to Pittsburgh to Magee Women's Hospital for a ultrasound and echocardiogram. The diagnosis was confirmed that day. The next couple of months consisted of trips to Pittsburgh for more ultrasounds and echocardiograms, appointments with genetic specialists and meeting the pediatric cardiologist who would be performing the open heart surgery on my newborn child. I also made several trips to the local library to do research and many hours of internet searching to find out whatever I could about what was to happen after delivering my little miracle. She was on a ton of prayer lines and was referred to as our miracle baby. Delivery was scheduled and happened on Wednesday, February 22, 2006 without any complications. It was a day that I had chosen because it was also Girl Scout Thinking Day. You see I am an employee of the Girl Scouts of Penn Lakes Council and before that, I was a Girl Scout leader for my other two daughters. I was also a Girl Scout when I was young. So it meant a lot to be able to chose that day. It was a normal delivery except for having two teams in the delivery room, the delivery team and the neonatal team. I was able to hold her for maybe 15-30 seconds after she was born before they wisked her away. A couple of hours later, I was taken down to the triage room to say goodbye to her before they transported her to Children's Hospital of Pittsburgh. That was 6 blocks from where she was delivered at Magee Women's Hospital. It was heartbreaking for me to say goodbye to her. I was able to get a pass to go see her that night. What a scary thing to see your baby hooked up to machines and wires everywhere. The surgery occured on Monday, February 27, 2006. When it was time for them to take her out of the room, my heart dropped. I didn't want them to take her. I was afraid of what was going to happen. Well, we sat in the waiting room for about 4 hours. She was so helpless. She had so many tubes and machines connected to her. Her chest was covered with this film to where you could see her heart beating inside. The surgery was a success. It wasn't until Thursday that she was able to have her chest closed. And she moved out of the CICU the following Monday. She is now 4 months old and growing like crazy. It is amazing to think about all that she has been through in her short little life so far. We will only have to wait and see what the future holds for her.

Sharon

2006-10-09T11:33:00.000-04:00

25 Weeks Pregnant

Normal Ultrasound Is What I Thought, Brad and I (Michelle) went in for the visit, Brad wanted to go just to make sure it was a boy and not a girl like I was teasing him it was. The ultrasound tech said all was fine but our babies arm was covering up his heart, No need to worry is what I was told, She decided we needed to be scheduled for a Level 2 Ultrasound. We made the appointment August 27th at 2pm.

Brad had a class in Hilton Head about 4 hours from home our appt was in Charlotte, So My mom and aunt went with me, The tech come in and spent quite a while never saying anything to me just kept going back and forth over the heart, She then looked at me and said that she was going to go get another tech to look, I knew then somthing was wrong, The tech came in looked for 2 minutes and said Meet Us In The Conference Room. That is where a genetic's counsler came in and said Your Son Has Hypoplastic Left Heart Syndrome. I had no clue what it was she then said it is fatal, I fell apart wanting to know what I had done, why was this happening she said she was not sure but, we needed to decide what we wanted to do. All this is pretty much a blur, We left the hospital and on the way home A nurse called back and said that the cardiologist needed to view the ultrasound before an official diagnosis could be given. An appt was scheduled for September 3d, 2003.

September 3 came, Brad,I and his parents went back for the appt, This time the cardiologist came in and explained to us in detail that our son did have HLHS and there were three options, 1st abort the pregnancy,2d compassionate care and the third was open heart surgery. Alot to think about so we asked questions, The doctor said that he would abort the pregnancy, Well after alot of us asking questions and him dodging the bullet we left the office.

Computer bound we become, We got on and started searching, Luck was with us, We found a family in our same area who had a son, She told us about the University of Michigan, The more and more she said we decided this is where we would go. We went for preop testing on October 3 and 4th and met with Dr Edward Bove, He was realistic but gave us hope. We planned on returning on December 3d, Dustin's due date.

Plans changed November 10th I went in for a rountine visit and they realized I had started dilating so off we went, We arrived on the 11th. I had weakly visits until November 26th when I started losing fluids, So I was induced.
November 27th Thanksgiving Day Dustin was born, he was perfect, out with a wisk they took him to go get settled, He did great those first two days, We were able to hold him and change his diaper things we hold for granted now, Saturday morning he was having a little trouble with higher saturations so they put him under a nitrogen tent, He continued to do well. His surgery was December 2 Norwood he went back at 7am and finally got back to the room at 4pm, He was off bypass and Dr Bove was happy with the surgery. we stayed with him until around 10pm when we switched off with my inlaws, Thinking all was okay. They called at 6:15 Wednesday morning and said we needed to get over there, I knew he was gone but I prayed, Dr Bove came in and said that he did everything possible but it was too late. We were in shock, we decided against an autopsy which now I wished we would have done, We no longer have our son but we were granted the happiest 6 days of my life. I just wished that no one would have to experience tragedy like we did, but it happens every day. There needs to be more progress made in finding out the cause to prevent congential heart defects in children.

Michelle

2006-10-06T08:25:00.000-04:00

David's Story

As I sit at the hospital, I realize how hard it is to write David story while it is still happening. We don't know the ending yet, but he has been a miracle boy from the beginning, perplexing all of his doctors and surprising everyone.

My fourth child and only boy, David, was born with a rare and complicated heart defect called Hypoplastic Right Heart Syndrome. We learned of his diagnosis in utero, and until recently, that was the worst day of my life. We were told he would either need a series of three surgeries or a heart transplant to survive. His life would never be normal- "they" said. But one doctor, our perinatal cardiologist, said the right thing....."You want to know you have done all you can for your child." That is so true. Isn't that what we want for all our children?

The First Surgery-
David was born on September 27, 2002 at St. Joseph's Hospital in Tampa. We were all ready for him. Just according to the plan we made, he was immediately rushed out of the room to the NICU, stabilized, baptized, and prepared to be transported across the street to the Children's Hospital Heart Center. David was put on prostiglandin immediately after birth to keep the hole between the right and left atriums in the heart open in order to survive. He had a heart cath with a balloon septostomy at 1 day and a "BT shunt" surgery at 5 days old. This surgery would place a temporary shunt to give him time to grow a little to be prepared for the next surgery. He was a "blue baby" because the level of oxygen in his blood was kept low. He came home 3 weeks later on a feeding tube. David developed severe reflux, so Hubby and I were on 24 hour shifts to feed and make sure he didn't aspirate. I recall being VERY sleep deprived. (Plus my 3 other children and their school and stuff. My husband was actually trying to work at the time to pay for all of this. How did we do it?)

The Second Surgery-
David had his 2nd heart surgery, the "Glenn", at 4 months old. This surgery would return the blood from his upper body straight to the lungs, bypassing the right side of his heart completely. After this surgery, he developed a relatively common complication, chylothorax effusions (fluid leakage in chest). Many children who have this complication go on diuretics and a no fat diet for 6 weeks. But David's effusions persisted. He battled chronic effusions causing 10 more hospitalizations with chest tubes and procedures. He had collateral coils placed in his chest (in the cath lab) at 8 months old, a "Thoracic Duct Ligation" surgery at 11 months, and Octreotide injections at 11 months. After 18+ months, the effusions finally stopped leaking and we slowly reintroduced fat into his system.

It was a very stressful time. We worried about his heart, infections, calcium levels, reflux, low weight, blue spells,... in addition to the regular baby stuff. But he did get stronger and feedings gradually got better. His effusions got better. As he started holding up his head, sitting up, and later walking (- mostly walking!), his overall health became better and better.

It was very hard surviving those first 2 years, but we did. By the time David was 3 years old, he was looking like a "regular" kid. He was running everywhere and getting into everything. He loved to ride his tricycle, dance to "YMCA", play baseball, and play with his trains.

But he was not "regular", by any measure! There certainly was something special about this boy. He touched hearts of everyone who met him- whether friends or total strangers. He would walk into a room, and people had to stop and comment. He was friendly and so incredibly sweet. He would strut down the halls of his big sisters' school giving "hi five's" to all the big kids. People in Starbucks and local restaurants greeted David when he came in. And, there was not a mean bone in his body. It is hard to believe, but he was SO GOOD, so well-behaved, and had such cute manners ("no thank you"). He had quite a contagious laugh! What a precious miracle!

The Third Surgery-
As David grew, the Glenn surgery would not be sufficient for his body's oxygen supply. On May 16th, 2006, David had the "Fontan" surgery. This surgery uses a gortex conduit to return the blood from his lower body directly to the lungs bypassing the heart. This surgery would complete the "Fontan circulation", leaving a 2-chambered heart rather than the normal four. David would have to take daily medications and wouldn't be a marathon champion. But after this surgery, he could live a pretty "normal" life.

After the Fontan, David's body started having difficulty with this new circulation. He developed a clot in his new conduit. He coded twice and we truly thought we lost him. Chances of his surviving were very low when they rushed him back into surgery. After many hours, he came out on an ECMO machine which is a heart-lung machine. We started talking about getting on the transplant list, but heart transplants in this type of acute case had little chance of success. David stayed on ECMO for 2 days and somehow, to everyone's surprise, he came off of it. They kept his chest open for 4 more days and he was on the ventilator for the week following. It was a true miracle that he turned around so quickly. Our hope was renewed. He is our miracle boy!

When David came off the ventilator, the doctors decreased his sedation. I started preparing to comfort an upset, miserable three-year old. That day never came. Neurology was called in and tests were run to see what has happened with his brain. At some point, David's brain did not receive enough oxygen. He had had a "global hypoxic event". David was completely unresponsive: no reflexes, no nothing. The neurologist said that we "may never see any more than this". This was the worst day of my life. How can you grieve your child when they are physically still there?

But this is David- a boy who has battled giants! By the time we called in another neurologist for a second opinion, David was already showing improvement. He started responding to touch and sound with small movements. Unfortunately, he had many setbacks medically with low blood pressure, more fluid in the chest, and his right lung collapsed. Getting all of his organs to come back takes time after all he's been through. With another time on the ventilator, we were exhausted of this roller coaster ride. He receives therapy and sees many specialists. We are working to get his stomach tolerating feeds through his new feeding tube. We still have fluid problems and his electrolytes are quite the balancing act.

David is still in the hospital. He has moved out of ICU this week and is making tremendous progress! His brain is slowly "waking-up" and what doesn't wake will have to be re-taught. We are looking to moving to the pediatric in-patient rehab at Tampa General Hospital when he is medically stable.

David is smiling now. He loves music and rides in the wagon. He is working to regain control of his arms and legs. He can get the oxygen canula off his face; he doesn't like it. He has said a couple of words and loves to drink juice. Every day I see more and more of our "David" coming through. Once again, he is surprising all the doctors with his progress. Each little sign of "him" gives me HOPE.

David is an amazing little boy who loves life and he's a real inspiration. I can't imagine life without him.

Lori
7-1-2006

**update - David passed away July 11, 2006. Here is the post from that day on his carepage.
July 11, 2006
We're very sorry for the delay in this post. The events of the past 24 hours kept us very busy until about noon when we went home to find ourselves without network access. Justin has been good enough to let me borrow his house to send this post.

We really want to thank everyone for their love and prayers during David's long ordeal. This roller-coaster has been unbelievable, and being able to talk to all of you directly and hear your words of encouragement has been a real gift.

This morning at about nine, David's time here on earth was over, and he went back to his home in Heaven. God lent us this fabulous boy for only a short time, and it is beyond difficult to see him leave. The hole in our hearts is beyond measurement, but we're holding on to the love and joy he shared with us and we're thrilled that he has been able to touch so many.

In a day of such darkness, we have seen one moment of light: the moment of David's passing. At the moment when he had no strength left, he gave us one last gift and took our burden from us. Let me explain...

David's surgery last night went as we feared. It was technically a success, but he was simply not strong enough to recover from that type of trauma. When we finally entered the ICU, we were met by all of our friends from the hospital who were on duty, and several who came in just for us. The news was grim: his blood pressure was not sustaining and there was very little chance of a successful recovery.

Our friends held us up and provided guidance as to what on earth we should do. Dr. Suh, Dr. Chapados, Dr. Pettigrew, Heidi, Chris, Erin, and many others were there to be sure that we knew they supported any path we chose to take with his care and that everyone was in agreement that David was very very sick.

We gathered our family at the hospital and explained to our girls that David was so sick that we had to take the opportunity to tell him how we loved him in case we didn't get another chance. I've never been so proud of our girls, as each of them took some time alone with David and saw through the injury and tubes and wires to talk with their brother one more time.

The girls built him trophys at Emily's suggestion and with the help of Lisa Winesette, the child life specialist, who came in from 9-12am just to help David's sisters. She showed how that job should be done: with love, attention and knowledge all putting the girls needs first.

When everyone had had a chance to talk to him, Lori and I settled in for a difficult night.

By the morning, David was being supported by several different drugs that can keep blood pressure up artificially well past the point when the body can support itself. The best use of these drugs is to buy time so that the body can heal, or to get the patient to surgery. But this morning, it was clear that David was not healing, he was losing his battle. And there really were no options left for us to pursue -- we and the hospital staff had done all we could.

Lori and I were faced with the fact that these medicines were holding David here on earth, and the only reason was so that we could keep him with us for a very short, very difficult time. It was leading to a decision that we dreaded.

Which finally leads us to David's final gift.

Literally just as we began discussing what to do, he lifted that burden from us. With a sudden change in heart rythm to get our attention and ten seconds of final kisses and tears, David made our decision for us and left this world to go home to his Father in Heaven.

We could not prouder of our son. I will post more in another update probably tomorrow. For now, I am reminded of Julie's graduation where we heard the song, "For Good"

Who can say if I've been Changed for the better?
I do believe I have been Changed for the better
And because I knew you... I have been changed for good.

Please let David's life change you, both for better, and for good.
Bill & Lori

2006-10-05T11:22:00.000-04:00

When we found out we were having another blessing just a few months after our first son was born we were just ecstatic because we wanted our children close as we already had a little girl in 2000. Well Samuel was due in September and all was going so well. Samuel was born at 5:54pm on September 11, 2003 he weighed 6lbs 11oz and was 21 and half inches long. We came home from the hospital the next day as they said he was perfect. I began to notice that he was sweating a lot and it was time for his 2 week check up and he just didn't seem right. I took him in and his doctor said it was just a cold and not to worry about it. I just had this feeling though that there was more but I figured he would be ok. Well on October 7th 2003 I decided I was ready to start working again so I took him to the daycare where his brother and sister were (they were the only 3 kids she had to care for). I went to work and not 2 hours later and she called and said Sammy was not breathing right. I left work and immediately I seen he was retracting every time he would breath and he was just soaked with sweat. I loaded him and the other 2 up and went to my mom's and called the hospital to see what to do as I was in a panic. I brought him down to Princeton MN to Fairview Regional Hospital where he seen Dr Luther Philaya. The minute he seen him Dr Philaya said we needed to call in a neonatal team and asked me where I wanted him to go and I said down to the U of M Campus. I called his dad and had to tell him he needed to get there fast as he may have to say good bye to his little boy. The NICU team got there and transported him to the U and that is where Dr Peter Hessline diagnosed him with a very severe COARCTATION OF THE AORTA and BICUSPIDAL AORTIC VALVE. He told us if we would have waited 24 hours our son would have passed on. He was rushed across the river to the U of M Campus where they do the surgeries on Oct 9, 2003 at 5am. He was taken into surgery at 7am and brought back out at 4:30pm. His surgeon Dr John Foker came out to tell us that he had repaired the coarc with a left subclavian artery flap procedure so it was all natural and would grow with him but as far as the valve they left it as it was functioning normally for that type of valve. Sammy spent 10 days in the hospital and was discharged. He was sent home with Captopril, Digoxin, and Lasix but within 30 days was off the Digoxin and Lasix. He had some very special people in his life down there at the U of M (University of Minnesota) like his cardiologists Dr Anna Tsirka, Dr Elizabeth Braunlin, Dr Lee Pyles, of course Dr Hessline and his awesome surgeon Dr, Foker who above all is one of the leading pediatric heart surgeon's in the world. Sammy is now almost 3 years old and the only thing he is on is Enalapril as he was left with high blood pressure which in some cases is normal. I must give one more BIG THANK YOU to the Ronald McDonald House in Minneapolis because without you we would never have been able to be with our sweet Sammy all together.

2006-10-04T08:57:00.000-04:00

This is our heart "story". When I was pregnant with our third child, I went in for my routine 18 week ultrasound and discovered that our little boy had several issues going on. He had what looked like cyst on both sides of his neck and also enlarged kidneys. His heartbeat was nice and strong and looked healthy. I thought "OK, his heart is ok the other things we can handle when he is born. I had an amnio done that day to check for any chromosomal defects. This test came back perfect! I continued to see my specialist and every ultrasound looked better and better. I was so excited to finally meet this little guy and hold him and see for myself that he was ok. On July 9Th we welcomed Samuel Jason Bocanegra weighing in at 9 pounds and 1 ounce, 20 inches long. He was born at 37 weeks and boy was I glad since he was such a big boy. Right after he was born I had to kiss him and let the nurses take him over to the nursery to get evaluated because he "grunting" alot. My husband stayed right with him. My husband then came back (with tears in his eyes) and stated that Samuel had a heart murmur. My mom has had a heart murmur all her life I knew this wasn't a big deal. A pediatric heart specialist was called in to give our son a total heart evaluation. After waiting all day we were finally able to speak with the cardiologist about my son's condition. He was on oxygen had iv's in him, he had a PDA and what looked like a bicuspid valve. He informed us that he would give medication for the PDA (to get it to close) and as far as the bicuspid valve it is fairly common and usually doesn't require anything at the time. He let us know that Arnold Schwarzenegger had surgery for this when he was around 40 years old. I thought "man, Arnold looks good!" I felt at peace with all of this. Samuel was in the hospital the first 12 days of his life and then we finally got to bring him home. He had oxygen at home for 5 days and then followed up with his cardiologist, he was able to discharge the oxygen and would do follow-ups with Samuel to check on him. After seeing him several time the first month it was decided that a heart catherization would be best to get a better look at Samuel's heart. (All the echo cardiograms he had kept getting worse and worse.) So on October 5th 2004 Samuel went in for his heart cath to take care of some stenosising and get some good pictures of his heart. That evening the surgeons informed us that everything went well but they had found multiple heart defects and he would require open heart surgery and soon. On Oct 11th Samuel went in for his surgery. It was so hard to let him go. I just wanted to take him home and for everything to be OK. Samuel had made it through a long and difficult surgery and we were finally able to see him. It was heartbreaking to see our little boy like that. I didn't want to leave his side for a moment. The nurse finally convinced me to go home get a good nights rest and get ready for the long healing process. (They promised they wouldn't leave side for a second.) After a surgery like that they require constant attention. We were blessed with wonderful nurses. At 5:00 am we received a call saying we need to get to the hospital fast. My son was not staying stable and the surgeon didn't know if he was going to pull through. We were not able to stay in his room until he got a little more stable. Finally we were able to go be with him. Then around 11:00 that morning everything fell apart again we had to leave his room and the next several hours were Hell. We were told numerous time he wasn't going to make it that we would have to come and say goodbye. How do you say goodbye to your 3 month old son? That evening he suddenly became stable and we were able to see Samuel and to stay in his room. The next 3 weeks were a total roller coaster ride with many ups and downs. Samuel's body started slowly shutting down and he was never able to recover from his open heart surgery. He passed away on November 6. 2004 just 3 days short of 4 months old. This is a very edited version of our story. We are forever changed. We feel so blessed and honored that God trusted us with Samuel. You can read more about him at www.sweetsamuel.memory-of.com. We hope to raise awareness to Congenital Heart Defects (CHD). Thanks for letting me share one of the most beautiful and sad times of our lives.

Susan Bocanegra

2006-10-03T03:29:00.000-04:00

We are a family separated by 2000 miles since October 2005 because of my daughter Macy's Congenital Heart defect HLHS. Unfortunately Macy developed a side effect of her last heart surgery in 2003 called Protein Losing Enteropathy, it has caused her to hospitalized on many occasions for infusions with each stay having it's own set of complications and different lengths of stay in the hospital.

In October of 2005 we were air lifted from Tucson, Arizona UMC hospital to Ann Arbor, Michigan C.S Mott's Children's Hospital because this is were Macy had all 3 of her heart surgeries and they are most familiar with her. Macy had Blood Clots forming through out her body and caused her to have stroke like symptoms. We were told of a procedure that could help her and the risk out weighed what was happening, she was to be the first child ever to have x-sizer or ing to be done....this is a procedure that had only been on adults but never a child. Basically they rotto rutter some vessels knocking out clots and sucking them out at the same time so they do not travel through her body and possibly to her brain to cause damage. Through MRI's and CT scans which are some of the most sensitive tests available ruled out that Macy had a stroke. What is believed clots that had formed changed the way that the blood was allowed to exit Macys brain and cause tremendous pressure which cause her stroke like symptoms. Macy has had to re learn every thing and since the x-sizer she has done nothing but improve.

We knew of Macy's heart defect before she was born in April of 2001 and decided to go to the University of Michigan/ C.S Motts Children's Hospital in Ann Arbor Michigan.

We are in the hospital right now with PLE issues and now a blood infection.

~Molly Weatherly

*Sept.Update - Macy is doing really well right now, we are still in Michigan, she goes to U of M Rehab 2 times a week for PT, OT, Speech and Motor group. She was hospitalized for two months after we arrived in Michigan, then starting in June she was in and out of the hospital for two months with PLE issues along with complications again.

I will not take her back to Arizona, so we are still trying to relocate...our house is on the market my husband has been filling out applications for work, he has flown here a few times to take test with no luck yet. I have only seen my 14 year old daughter Desiree while Macy was in the hospital in June through August. Desiree has started her first year of high school in Tucson because we are not even close to being situated yet. I have started taking wellbutrin again in hopes to cope and feel better about all of this. My heart aches for Macy all the time even when she is doing well, because of many things and I know it is only a matter of time before something sets off the next PLE episode....like just having HLHS is not enough...I take her to the play ground and I watch her struggle to do what normal kids do with a breeze....I watch her when she plays with healthy kids and how they leave her in the dust...all this is just heart wrenching to me all the time. I love her to no end even though it hurts so bad. I have never felt so crushed in all my life. I really do not have much to offer any one any more....I hang on to the love she gives me...the cute things she says and does this helps me through my days. I believe there is a God, I have had the realization, I am so hurt and angry I have not been able to go there since I found out that I was having a baby with HLHS and through it all what I have seen and dealt with makes me continue to feel the same.

2006-10-02T07:20:00.000-04:00

Ashley Marie Borst was born July 25, 2000 in Searcy, Ar. She was a full- term pregnancy, and was pretty and pink when she took her first breath. The doctor's didn't not know what was wrong, but her oxygen level was lower than they wanted it to be. So they wanted to take her to Little Rock for some test to make sure nothing was wrong. My husband and I were not scared yet, because we did not know anything. But when we made it to the hospital, they dropped a bomb on us. They found that her left side of her heart did not fully develop they called it hypo-left heart syndrome. They also told us that she was born without the membrane between her brain. Agenesis corpus callosum. Here we are with our first born child, and we did not know if she was going to live. They moved us over to Arkansas Children's hospital where we found hope. They explained more about the ACC and what to except, and the doctor's told us we had options to fix her heart. One, have a three part procedure to re-route her heart, have a heart transplant, or three do nothing and just take her home. Well the third was not an option for us. And we were not sure about a transplant. So we decided on the first option. But there was a down fall to that option. She would have to have three open-heart surgeries. And at that time they were sending their babies out to other hospitals because they did not have a head surgeon. So we flew to Cleveland , Ohio. And there at two weeks old she had the first stage Norwood procedure. She did very well. And after a week, we came back to ACH for recovery. We brought our baby girl home for the first time when she was four weeks old. And we were a little scared because not only was she our first born, but a newborn who just had a major heart surgery. But my husband and I made it through and got used to the medicine she had to take. It was not long before is was time for surgery number two. It took place at our Children's hospital because the surgeon, who performed her first surgery transferred to ACH. Ashely was 5 1/2 months old, when she had her second heart surgery. For me it was harder this time because we had her home for those months, and I didn't not want to give her up. The surgery went as planned, but this time she stayed on the ventilator for seven long days. But after that she did just fine, and we came home 3 1/2 weeks later. Ashley's third procedure, was May 16, 2006. We have been home a little over two weeks now. And she is doing great. Her surgery went as plan, but we did have a set back with fluid around her heart and lungs two weeks after surgery. We were getting close to going home when they discovered the fluid. So she had to have two drainage tubes put back in to pull the fluid off her lungs, and have surgery again to insert a tube to pull fluid off her heart. This was very hard for us too watch her have to go through that again. But with many prayers she had the tubes for a week and then they were removed. But that was not the only set back. She developed an infection from one of her tubes and had to be put on antibiotic's. This last surgery was very difficult because Ashley was older and more aware of what was going on. I had a hard time watching Ashley go through these major surgeries. And in the back of my mind I questioned if we were doing the right thing. But over the years, I realized it was never up too me. God always had control. And when I came to see that, it made all of this worthwhile. We have a beautiful little girl, who loves music and swimming. And I would not trade the memories we have made or future ones for anything in the world. I hope by sharing Ashley's story, that parents see that they are not alone. And that with faith there is a bright shinning light at the end of tunnel.

Rachell Borst

Searcy, Arkansas

2006-09-29T05:48:00.000-04:00

Abi’s Story

In July of 1995, we welcomed our third daughter into our family. Abigail Austin was born in a large, suburban hospital and we were relieved for her to be declared “healthy” except for the slight heart murmur, which we were told, was probably normal and would probably disappear in a few days. Having heard this with other children and not having been given any specific symptoms to watch for, we promptly put any worry out of our minds. However, we soon learned that this was a huge mistake and that heart defects can sometimes display themselves in a very dramatic fashion.

When Abi was 9 days old, she suddenly stopped breathing and turned very blue. We called 911 and her father performed rescue breathing on her. She began breathing again just before the ambulance arrived. Realizing the seriousness of the situation, the paramedics got permission to transport her to INOVA Fairfax Hospital for Children instead of a smaller local hospital. Abi stopped breathing a few more times in the ambulance and they were finally able to stabilize her in the Pediatric ICU. Three days later she had surgery to repair coarctation of the aorta. Her recovery was difficult, but Abi has flourished under continued cardiac care. She will soon turn 11 years old and is an undefeated pitcher for her fast-pitch softball team. Parents should be made more aware of the symptoms of heart failure when their infants are diagnosed with a heart murmur. We almost waited too long. It would have been a shame for our Abi to die just because we were not made aware of the symptoms we should have been looking for.

Lori Austin

2006-09-27T10:23:00.000-04:00

Justin Lee Shelnutt arrived at 8:05 on Sunday morning, February 25, 2001, his tiny cry filling our world. We eagerly called friends and family to announce our newest miracle, weighing in at 7 lbs, 5 oz, and measuring 20.7 inches long. We nuzzled the familiar soft, black hair- present and past entwining as we embraced this perfect, new individual and remembered his brother’s arrival in that same room two years before. Justin Lee breathed joy, free of worry, into our lives for one blissful day. The next morning our idyllic world spun out of control. In a blur of doctors and monitors, our baby suddenly seemed to be in trouble, and he was rushed to Children's Hospital of Omaha. Fear turned to terror as we reached the hospital to hear words we never knew to dread: Hypoplastic Left Heart Syndrome (HLHS). Over the next few days we endured a rollercoaster of utter devastation and fear, finally finding hope with the Norwood Procedure, a three stage operation to rework the plumbing of his malformed heart. We clung to confidence in our surgeon as a tool in God's hands. Days turned to weeks as Justin Lee emerged from Stage 1 and seemed to thrive. We no longer had to strain to remember just what HLHS stood for. Our old way of life was a memory we had no time to dwell on. Hope covered fear, but it resurfaced at times. Especially when fatigue won out and we slowed down to think. Between my toddler at home and my baby at the hospital, I always felt needed. The dream of holding them together danced just out of reach. Justin Lee came home the day he turned 6 weeks old, after Stage 1 surgery, a revision for a clotted shunt, a heart cath locating a rogue pic line, and recovery from an infection. My dream of holding my babies together and having them both home on Easter came true. We had five cherished weeks at home together, though weeks of upheaval as we prepared to move to Oklahoma. While our actual arrival to Oklahoma City was being pushed back until after Justin's stage 2 surgery, our house had sold and we had to move everything out. Most of our household things went to storage in Oklahoma City and we reserved a room in the Rainbow House, a home for patient families near the hospital. On May 15th, we took Justin in for a heart cath to evaluate timing for the stage 2 operation. He had some complications when he awoke, hallucinations from the medication. They decided to hold him overnight. After a rocky night, we took him "home" the next afternoon. As afternoon crept toward evening, we involved ourselves in the everyday of our new lives: a trip to the store, an afternoon with family friends, and a quick stop to pick up dinner on the way to our room at the house. In the car, on an unimpressive stretch of road, our precariously balanced world began to turn upside down again. Justin seemed to choke and then began to cry, but not a cry I recognized. He looked a bit blue, but then that wasn't necessarily new to us, and the car dome light didn't offer much insight. As analysis was abandoned for fear, we rushed to the ER, as Justin continued his strange little chanting cry. As I pushed through those glass doors and ran to the admission desk, his tiny body went limp. They took him from my arms and ran to a room, and we were moved to a waiting room while they tried to resuscitate him. Justin Lee went home with the angels that night, and all hope turned upward. His story is one of love, of faith, and struggle, and also of the innocent naivety most parents share. We didn’t know about congenital heart defects, that they are the most common birth defect, and that more children die of chd than all forms of childhood cancer combined. We had no idea how often it strikes, and that our ultrasound failed to find a problem with his heart because of the lack of awareness. Faith carried us throughout Justin’s too-short life and one day, it will bring us together again. Until then I want to illuminate his mark on the world. I want to share his story, to allow his fight to help bring awareness and hope to the other 1 in every 100 children born with a congenital heart defect. For this is Justin’s promise, and that is ever undying.

Visit Justin's Website

2006-09-26T09:08:00.000-04:00

Hi, my name is Amanda Schaefer, and this is the story of my son, Wyatt. Our family consists of Jeff, myself, Megan-heart healthy (19), Ashley-heart healthy (15), and Wyatt-TAPVR & ASD (14)

Wyatt was born on June 15, 1992, after being almost 3 weeks late. (I went into early labor with him in May, but they were able to stop it) He weighed 8 lbs and 10 oz. I was sure something was wrong with him, but I couldn’t get any answers. I had a lot of health issues, and they said I needed to stay calm. Wyatt was born around 2:00 p.m., but by 6:00 p.m., we still didn’t get to hold him or anything. Finally, my husband went to talk with them and explained how much this was upsetting me, so we were able to hold him, but only for a short amount of time. They assured me he was fine. We found out later that his apgar score was 9 the first time, but 5 the second. I understand now that isn’t a good sign. I dreamed 2 weeks before I had him that all of this happened, so I was a little jumpy about things. Anyway, they sent us home on Wednesday. We live in a very rural community, and the hospital care isn’t much for a situation like this. I took him back to the doctor several times between Wednesday and Friday. He was yellow, but they said it was only a small case of jaundice. The girls had that too, but they didn’t look like this. His eyes were swollen and he was clammy. They assured me that it was just a newborn eye infection and gave us some ointment to use. They said he was clammy because it was mid-June. My husband wasn’t able to see much of this, because he was at a job that he had to work long hours. Sunday was his only day off. When he did see him, he was sleeping, and thought well he looks ok to me. After spending the day with him on Sunday (Father’s Day), he saw what I was talking about, and we decided we would take him to the doctor on Monday and demand that they do some testing to figure out what is going on. I had a bad feeling all day, and I couldn’t shake it. I could not get Wyatt to take a bottle all day. That’s not good! So I woke him up about 10:30 that night, with the intentions of trying one more time, but when I did, he quit breathing. By now, I’m hysterical. My husband and I drove him to the local hospital with me holding him. He quit breathing several times during the 10-minute drive. I would just shake him, and that would startle him enough to gasp for air. When we got him in the ER, the pulsometer reading was only 42%, and he was starting to turn blue. The staff finally called for a helicopter from Columbia, MO. When the staff landed, they took us out to a waiting area, where we waited for 3 hours, with no one telling us anything. We kept seeing people hurry out of ER and go to the nurse’s station and back, but they wouldn’t tell us anything. Finally one of the people from Staff for Life came to talk to us, and said it would probably be fatal. They asked us to sign waivers for them to treat him without us, because there wasn’t room. They had a lot of equipment to try to save him, so we did that, went home to arrange for longer term care of our girls, pack a few things and rush to Columbia. We arrived about 4:00 a.m. The Columbia staff by now had figured out that it was a heart problem, but didn’t know what. So more testing…. Finally about 12:00, the staff from Children’s hospital in St. Louis arrived with their helicopter and equipment. We went through the same thing all over again, with sign here, etc. Then we drove 3 hours to St. Louis. We were ushered into a room with about 20-30 doctors firing questions at us. Then we got to go see Wyatt. He was in ICU, with a heart/lung machine hooked to him (ECMO). It was very difficult to see him like that. I still have a lot of guilt because it was so hard for me to see him that way. The doctors explained that he needed to be on this machine to get him strong enough to have surgery. Without the surgery he would die. With the surgery he might anyway. It was all very overwhelming. They explained what TAPVR is, and what to expect, etc. The next morning, at 8:00, he went to surgery. After 8 hours, we were told that everything was going well, and they would be closing soon. They gave us instructions on going to the recovery area in ICU, etc. The next thing you know, they ushered us into a private room, and brought the clergy in and explained that they were losing him on the operating table. They hurried to finish his ASD patch, and get him stabilized. We found out later (about 3 months old) that the patch didn’t work, and so they did another catheritization and determined that he needed another one. This one was man-made and would grow with him. After his first surgery, he was in the hospital for about 2 weeks. Then he got to go home, and I remember how scary that was. What if I can’t care for him, or something goes wrong. St. Louis is so far away in a situation like that. Somehow we made it though. Wyatt had a lot of complications from the lack of oxygen, etc., but he’s ok now. His immune system was really messed up for about 2 years. He had whooping cough (pertusis), pneumonia, double pneumonia, rsv, etc. He is now 14 years old, and is a very normal kid. He is very active in sports, etc. He plays football, baseball, and runs track. He has to go to the cardiologist every 5 years for the rest of his life, but so far the visits have been great. He has no restrictions, and is doing well at school. Most people couldn’t tell there was a problem, unless they get close enough to see the scar on his neck or chest.

Thanks for your time, and thanks for what you do!

Sincerely,

Amanda Schaefer