Wednesday, October 11, 2006

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.

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