Saturday, July 01, 2006


La Forest family heart story.

Aidan Kristopher La Forest 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 mom 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 four 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). HLHS 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 “half 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 3 open heart surgeries before the age of three and or need a heart transplant. We were devastated! Forty-five 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 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 1st 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 2nd 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 month 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.

Friday, June 30, 2006

Gregory family heart story. www.austinsheart.com

With the birth of our son Austin came a world wind of emotions. We knew even though we were putting an end to the complicated pregnancy, that his birth would bring so many more challenges.

At 22 wks pregnant my husband and I went in for a routine ultrasound and came out not knowing the road ahead may bring. After two more ultrasounds our worst fears were confirmed… our precious unborn son’s heart did not develop right. We met with Dr. Kanakaria who bless his heart kept telling us that we did not do anything to cause this, he promised us that when Austin was born he would make sure he got the best of care. It did not keep us from wondering what we did, and making us feel like our world was being taken from us. In utero he was diagnosis with Common Atrium, Single Ventricle, Pulmonary Stenosis, and possible Heterotaxy Syndrome, and asplenia, and until he was born they would not be able to draw any further conclusions.

On July 3, 2005 Austin Skylar Gregory was welcomed to this world. As soon as he was born I got to hold my precious son in my arms, and with in a matter of seconds he was wisked away from arms and taken down to NICU. I did not want to let him go, but made sure my husband followed him and watched him closely. Not long after his birth he was vented, but seemed to remain stable. As the days went on we thought he was progressing well and soon would be on his way home. Then we got the call…and when we thought the ride was coming to an end, we QUICKLY realized it was just getting started. One minute we were told that our son would be coming home in a few days, and the next Dr. K decided that Austin was going to need to get the BT Shunt placed in after all. Three days later he was in surgery. Dr. Bailey said the surgery worked great and he should be home by that weekend, but that night he had a few setbacks. My husband, Suzy, and I watched as the doctors calming starting bagging our son. In a matter of days he turned for the best…the ride was looking good. Once again we prepared to bring our precious angel home. The day we were getting ready to bring him home, he starting having complications with his breathing and heart. Dr. K and Dr. Bailey decided to do an echocardiogram. We were told that the procedure should only take an hour, well an hour turned into a few hours. All of a sudden we got the call to meet the doctor on the heart floor. We were told that Austin would need emergency open-heart surgery. The BT Shunt was clotted. The doctors gave him little chance for survival. They did not foresee him making it out alive. All we could do was cry and hold each other hoping for the best. My husband and I got to spend about an hour with our son before going into surgery. He lay there hooked up to machines, he looked so peaceful, but yet his heart was still broken. Would he ever be whole again?? Me and Mitch got to go down with him to the OR, when the time came to leave him there not only were we but the nurses eyes were filled with tears, we all feared the worst.

The Surgery was a SUCCESS; it did not take long at all. Dr. Bailey and his team did a great job. Austin once again proved just how strong he was. He was a fighter. and like papa called him he was a TIGER They had to leave his chest open, because of the swelling. They decided not to put any more pressure on his chest. He was in critical condition but he was doing well. We had spent the next day by bedside watching our angel, and within ten minutes of leaving his side we started to have a heart attack. Luckily Dr. Bailey was at his bedside and literally used his fingers to pump Austin’s heart. Austin’s body functions started to fail at time but the doctors always seemed to make everything work again. He then got NEC and his abdomen soon became swollen, after about a week he fought it off with the help of strong medication. He was looking good again. I finally got to hold him, but it was not for long he seemed to not be doing well off the ventilator, so they had to re-intibate him. Then his central line got infected and when they pulled it our blood clots released into his body. Austin did not let them get him down; he fought and kept fighting harder then ever. It was so hard to just sit there and watch our son go through all of this knowing there was nothing we could do to make things better for him. Why couldn’t it have been us? We would have done anything to take his place. A week later, Austin suffered from a neurological stroke. He was down for some time. Dr.’s feared the worst. What kind of damage happed to him during that down time?? They thought he may have lost his vision. After that he just laid there helpless. They were no longer able to take blood from the line, and he was getting bedsores. The NEC came back. Things were not looking good. We had to start deciding how far we were going to push our son. The doctors wanted to place a broviac in put the day they planned to do it, they soon realized his veins and arteries in his upper body were no longer any good. They were thinking about placing it in his upper thigh. They sent in someone to let us know what the changes would be. My husband asked her what the chances that this will work are and what are his chances of survival. She looked at us with tears in her eyes and said it would only give him a few more days of life, that they knew he would not live to see his first birthday. We were so overcome with emotions; all we could do was lay our heads by our sons and cry. After some more tests were taking they realized that his body had been full of at least 35 blood clots and inside the clots were sepial fungus. They said they could get rid of the fungus, but they would have to get rid of the clots first, and that could take months to do. Austin did not have months. He was swollen from head to stomach, and some times you could see blood at the edge of his eyes. He was not looking good, and you can see he was getting tired. He no longer help our fingers like he once did, and he just lay there lifeless, even though he had been off the drugs for a while. He would not wake up. Then the news came that his head was swelling. Apparently he had a blood clot on the base of his brain blocking the blood from leaving his brain. They wanted to put drains in his head to take care of the blood problem. But they said there is a good chance that he would die in OR. They said a healthy child does not have a good chance of survival, so his were really not good. When we looked at our precious son we knew he was tired and it was time to just let him rest. I could put him through anymore pain. My husband and I decided to place him on comfort care. We left the vent on and continued his medication, but did not allow any more intervention. If he started to pass they were to call us. Four days later, on August 29, 2005 we received a phone call that it is time and for us to get there quick. We lived about 45minutes away so we called his godmother Suzy and asked her if she would go sit with him. We wanted someone that loved him there with him if he passed away before we got there. When we got there we were a companied by his godfather Scott, godmother Suzy, and Janet a family friend. My husband and I went up to his room. We got him dressed in his coming home outfit. We talked to him and told him that we loved him so much, and we would really miss him. Then we had them take everything off of him. We did not want him to pass hooked up to wires and machines. My husband Mitch made sure they gave him plenty of drugs so he would not feel pain. And then we took turns rocking him. It was only the forth time I help him and my husbands 3rd. Mitch knew how important it was for me to be the one who held him as he passed. I was to first to hold him when he came into this world and I was going to hold him as left. It took him 15minutes and I fell that he felt no pain. He gasped for a breath three times and on the third one he passed away. He looked so peaceful, like a little angel. My husband rocked him, and then I got my first and last dance with him. It felt like he was in heaven dancing with me. After Scott, Suzy, Janet, Joey (Mitch’s brother) and Mitch’s dad came in and held him too. When the time came to take him down Joey wanted to go with him, and it made my husband and I realize we could not let him go alone. So with a lot of persuading they let me sit in a wheel chair and carry him down. We took him into the morgue and gave him kisses.

He service was beautiful; Mitch and I dressed him, did his hair, and arranged all of his tigers around his casket. It was our way of showing him to all those who never got to see him.

His life was never easy but he was a strong fighter. We were not only proud, but also blessed to be his parents. Looking back on the experience it was a long roller coaster ride, but well worth it. We promised ourselves that as long he got one breath of life then we did him right, we did not let them talk us into aborting him when we were pregnant, because we knew he was special and deserved a chance. Austin was too precious to live on this earth. God had something else planned for him. He is now our angel. We knew that it was his time; we had to let him go to heaven so he could be hole again. We did not do it for ourselves. This was all about his quality of life. My husband and I may now live with a broken heart, but our son’s heart is whole again, and that’s what matters. We will never be the same people again, but we learned that family is what matter and nothing else. Austin will forever be remembered. He had such a huge impact on people’s lives. We thank you Austin forever thing you taught us, you are truly a miracle, and a beautiful angel. We know you are up there in heaven watching out for all the other heart babies. WE LOVE YOU!!!!

Wednesday, June 28, 2006

Chambers family heart story.

The joys of pregnancy, oh, I had heard the wonderful tales, morning sickness, weird cravings at 2:00am, etc. I had also been told about the scary things that can happen in pregnancy like placenta previa, pre-eclampsia and host of others. Even with all the people trying to scare me to death about being pregnant, my pregnancy was going great. I never had a bit of morning sickness, and the cravings?? The only craving I had was food! Because everything was going so beautifully, I wasn’t worried about anything, just curious as to whether God had given us a boy or a girl.

At 21 weeks we had the first ultrasound. We did find out we were having a girl and immediately we named her Lydia Faith. Little did we know how much that name would mean. While they checked everything, Lydia kept turning and being so active that the sonographer could not see the bottom of her spine or her heart really well. So she rescheduled us to come back in a couple of days for a repeat ultrasound. We didn’t think it was a big deal, we were just excited that we would be able to see our baby again. At the next visit, the sonographer saw that her spine was okay, but again could not see her heart really well and just blamed it on shadows. She sent us on to see the doctor and he came in and looked at the ultrasound pictures. He kept looking at them and said that with the way Lydia was laying, her heart should have been visible. He decided to go and get the portable machine and take a look himself. When he looked, he also could not see, but blamed it on the poor quality of the machine. He decided to send us home and have us make another appointment in a few days with their best sonographer. While we were at the check out desk, he came and got us. He brought us back to the ultrasound room and explained that he had been mistaken. The lady who had done the ultrasound was their best sonographer. He wanted her to look again, this time with him in the room. What we found out next changed our lives forever. He turned to us and said, “Mr. and Mrs. Chambers, I don’t want to scare you, but we can only see half of a heart.” We were so stunned. I do not think we could ever forget that day and realizing that something may be wrong with our baby. But looking at the pictures, and just having a little knowledge of anatomy, we knew that something was not right. He decided to send us on to a perinatologist at a leading hospital downtown so a diagnosis could be made.

We saw the perinatologist at 23 weeks and he confirmed that Lydia did indeed have half of a heart. He said that her condition was a combination of complex congenital heart defects. We had never even heard of “congenital heart defects”! He went on to explain that Lydia had three complex defects: Transposition of the Great Vessels, Tricuspid Atresia and a large Ventricular Septal Defect. He referred us to a pediatric cardiologist who reviewed the ultrasound. When we met with the cardiologist, he informed us that with her combination of defects she would need three open heart surgeries to repair her heart. Again we were stunned. What was once a possibility was now reality. While our baby inside me squirmed around happily, not having a clue she had a broken heart that needed fixing, our hearts were truly breaking. The thought of our child having to go through so much was overwhelming.

After the discovery that Lydia had congenital heart defects, the name we had given her also took on a whole new meaning. Lydia is a Bible name, meaning “seller of purple.” With Lydia’s heart defects we learned that she would be a “blue baby”, but would actually look purple. Her middle name Faith was just right…only the Lord knew how much faith and trust we would need in Him so He could show himself faithful. Lydia Faith…it was perfect in every way, no matter how much was wrong with her. God had made her perfect, just the way He wanted her to be and had given her such a special name.

At 25 weeks things took another a turn. For no known reason, I went into pre-term labor. My doctors sent me to the hospital and started Magnesium Sulfate to stop labor. They then put me on an ambulance and sent me downtown to the hospital that I was to have Lydia at. Once there in Labor and Delivery, the perinatologist came and saw us. He was very worried and said he wasn’t sure what was going to happen. He also told us to start considering whether to have Lydia vaginally or by a C-section. Either way, Lydia’s chance of survival would be slim, considering how premature she would be in addition to her heart defects. That was a big blow and it seemed like the world just stopped. The thought of losing her was unbearable. A little later they brought in the birth certificate for me to fill out, just in case. Thankfully, the Lord was very gracious to us and allowed the contractions to slow through the night. Finally, the contractions ceased and I was taken off the Magnesium Sulfate and put on breathine. The breathine treatment was successful and was still keeping the contractions to just a few a day. After five days in the hospital, they decided that I was doing fine and could go home on breathine and complete bed rest.

Once home, bed rest did prove to be hard, and even unbearable at times. It was lonely because Steven worked very long hours. During those times, I was left alone to battle with all of my fears about the unknown. Being a first time mother there is always those “fears”, but when God has seen fit to entrust you with a special child with severe health problems, those fears sky rocket. At times I struggled so much with my emotions…I couldn’t understand how God could do this to MY child. I doubted that God even loved me at all. Why couldn’t I just have a normal pregnancy and a healthy baby? I knew all the right answers, but the battle within me was so strong. But then a friend reminded me of Psalm 139. Some of my favorite verses from that chapter are verses 14 and 16. “I will praise thee; for I am fearfully and wonderfully made: marvelous are they works; and that my soul knoweth right well. Thine eyes did see my substance, yet being unperfect; and in they book all my members were written, which in continuance were fashioned, when as yet there was none of them.”,. I committed the chapter to memory, and God’s Word truly brought even more peace to my heart. God was in control. What may be considered “defects” in the medical world, really are not defects. Nothing happens by accident…God made Lydia the way she is for His glory and our good.

The rest of the pregnancy went smoothly but was very busy. There were many, many ultrasounds done by the perinatologist to make sure Lydia was growing and was healthy. It was only the grace of God that allowed me to make it to term with Lydia.

After months of anticipation, Lydia was born at 39 weeks on September 19th, 2003, after 18 hours of labor. She handled the labor great and cried twice as soon as she was born. It was amazing; she was chubby and pink and looked completely healthy, even having apgar scores of 9 and 9. She weighed in at 7lb. 8oz. and was 19 ½ inches long. While the NICU team examined her, she was completely quiet, eyes wide with wonder, taking in the world around her. After her assessment, they took her to the NICU for further evaluation.

I cannot explain to you the importance of knowing that she had congenital heart defects before birth. Lydia “masked” her defects, so to speak. Many babies born with defects, turn blue soon after birth, have labored breathing, and some have heart murmurs. Lydia had NONE of these; she looked and acted perfectly normal. They told us that had we not have known that Lydia had heart defects, she would have gone home like any other baby, and would have gotten gravely ill very quickly. They said by the time we would have discovered her defects, it would have most likely been too late to help her. Praise the Lord for great doctors who discovered her problems!

Lydia did wonderful in the first few days after birth, but she quickly developed signs of congestive heart failure. At five days old, she was transported to the only hospital in the region that operates on babies with congenital heart defects.

The days leading up to her surgery were very emotional and very hard. We held her as much as we could, trying to get to know our sweet baby. We were faced with the knowledge that these few days may be the only days we ever had with our baby and we tried to make the most of them. Going home at night was rough, especially seeing her adorable nursery. We looked at it every day, just hoping that she would one day be able to come home and see it.

Lydia had her first open heart surgery on September 29th, 2003, at ten days old. She had the Damus-Kaye-Stansil procedure along with a Blalock-Toussig shunt. Surgery did not go as well as expected and took a few hours longer than planned. While Lydia was leaving the operating room and going up to the Cardiovascular Recovery Unit, she crashed. She had severe bleeding and almost died. She was very unstable, even requiring the surgeon to open her back up twice in the first 12 hours after surgery. But God was good and gave her the strength to overcome so many obstacles. Seeing her for the first time after surgery was shocking. She was swollen beyond recognition and was gray, like a corpse. She had tubes and wires coming out of everywhere. She was fighting for her life while we fought to hold back our tears and be strong for her. We never took any pictures of her like that because we didn’t need to, the image will forever be seared in our minds. After 5 days, they were finally able to close her chest. Two days later she was moved back to the NICU where she recovered for another two weeks and then was able to come home.

Once home, Lydia still did great. She had the normal struggles like most heart babies with eating and gaining weight though. She was always too tired to eat well and all of her meds made her sick to her stomach. She would eat, and then throw up. Everyday was a battle to get her to eat, but she did, and slowly gained weight. She was such a happy baby, so content no matter what.

At five months old, her cardiologist felt like she needed her second open heart surgery. Her sats had dropped considerably and she was very blue. She had a heart catheterization and surgery was scheduled for two weeks later. On March 8th, 2004 she underwent the Bi-directional Cavopulmonary Shunt procedure and her BT shunt was removed. This surgery went beautifully with no complications and she was home in just 5 days!!

After her second surgery, Lydia was a different person. She ate like crazy and grew very quickly. Soon she looked normal instead of sickly like before the surgery. Since that surgery two and half years ago, she has grown into such a beautiful little girl, very bright and articulate. She is so sweet and always cares about others. Even with all of the poking and prodding she has put up with through the years, she has remained sociable and happy. Lydia has done so well, surpassing all of her doctor’s expectations. She has had relatively few problems in comparison with other heart babies.

A lot has happened in the last two years. Lydia was joined by a sweet baby brother who also is a special child. Having been born 12 weeks premature, Caleb had a slow start to life, but now he is a year old and chasing after Lydia. She is a wonderful big sister…what a blessed family we are to have two miracles!

Now, at almost three years old, her cardiologists feel that it is time for Lydia’s third open heart surgery. She is usually always tired and her oxygen saturations in her blood have been dropping. It’s a sad thing as a parent to see your child unable to play like other children because she tires out so easily. It is also a strange time for us…even though we have known about this surgery since her pregnancy, it has always seemed so far away, and now it is suddenly here. Time sure has passed quickly. She will be having a heart catheterization within the next couple weeks and then her open heart surgery will be scheduled. During this catheterization they most likely will have to do some intervention and open and close different veins in her heart. Her upcoming surgery will be the Fontan procedure, which will allow all of her blood to be oxygenated and she will no longer be blue. It will take place this summer, probably in July or August, and it will be done by the surgeon who performed her previous operations. Hopefully, this will be the last open heart surgery she will ever need.

We are so blessed to have a child like Lydia. She has taught us more than we could have imagined. Congenital heart disease has totally changed our lives, but not in a bad way. We have been fortunate to realize that life is so precious and every day is a gift not to be taken for granted. We are humbled to know that God entrusted us with such a special daughter. We hope that through her story and life, we can touch and encourage somebody else with a broken heart.

Tuesday, June 27, 2006

Boehne family heart story.

Our little Zander was born on September 7, 2005. Expecting a perfectly healthy baby we were devastated to learn that Zander had a rare heart defect. He had Total Anomalous Pulmonary Venous Return (TAPVR). His pulmonary veins were fused together and on the wrong side of his heart. He was not able to receive oxygenated blood back from his lungs. His oxygen levels were in the 30's. He was life-flighted to St. Louis Children’s Hospital where at one day of age he had open heart surgery. The doctors were careful about showing any optimism. After the surgery he had an intracranial bleed which caused seizures. We were told that because of the lack of oxygen he suffered and then the brain bleed to expect Zander to have significant brain damage. We were able to take Zander home at 4 weeks, but two days later we were life-flighted back to St. Louis. He was in respiratory distress. He was having pulmonary hypertension due to his pulmonary veins becoming blocked.

His surgeon performed another open heart surgery called a marsupialization when Zander was two months old. This surgery involved taking the lining of his heart and creating pouches to let his pulmonary veins drain in to. Our surgeon, Dr. Huddleston, gave us a 50 % chance that this surgery would correct the problem. Unfortunately we were on the wrong side of the 50%.

Although the operation corrected the issue with his heart, we were too late to save his lungs. We were told that Zander’s only chance for survival was a bilateral lung transplant. Zander was listed for transplant on November 18th and on December 4th he received his transplant. We were able to come home when he was six months old. We came home with Zander still being on the ventilator 12 hours a night and with a g-button for feeds and medicine.

Although Zander is developmentally delayed in his motor skills, he is showing no signs of brain damage like the doctors had told us to expect. We were able to take him off the vent completely last week and are hoping to remove his trach around his first birthday. This has been an incredible journey with both ups and downs, but we could never imagine life without our little guy. We know that someday we will have to go through this again, as transplanted lungs do not last forever. He is truly a miracle in our eyes.

Monday, June 26, 2006

Garfield family heart story.

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 a chest 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 (TOF). 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 outcome for our “special little man!”

Sunday, June 25, 2006

Prior family heart story came from http://www.thelewispriorfoundation.org with permission from heart mom, Karen Prior.

Lewis was born on August 5th 2001, he was our fourth child. At 5 days old Lewis collapsed & we were rushed by blue light to the Royal Shrewsbury Hospital Special Baby Care. Lewis's whole body had gone into total shutdown, he was transferred to Birmingham Children's Intensive Care Unit, it was here we were told he had a condition known as Hypo-Plastic Left Heart Syndrome, this basically means the left hand side of his heart was underdeveloped.

He suffered a mini stroke, and at ten days old underwent the first of three stages of major open heart surgery. He remained on I.T.U, caught the MRSA Virus and was extremely sick. He had his second stage of surgery at just three months old, three to four months earlier than children with this condition generally have it. In December 2001, Lewis was transferred onto a ward, to spend his first ever Christmas in hospital, we traveled the 100 mile journey every day to be with him, or stayed with him which obviously meant being away from our other three children.

In January 2002, Lewis was transferred back to Shrewsbury hospital, then eventually allowed back home. We had to learn how to feed him through a feeding tube and give him his heart drugs, he was on eleven a day. Our day started at 6 am and he had his last drug at midnight, but at least he was at home.

Lewis needed to go for a routine catheter, they needed to balloon his aorta, the procedure generally takes half an hour, but Lewis arrested twice during it and was again place back on Intensive Care and we were once again on the emotional rollercoaster ride, living at Birmingham Children's Hospital, away from our family. He amazed doctors again by bouncing back so quickly and we again took him home.

The 5th August 2002, a day we thought we would never see, Lewis celebrating his first birthday with his family at home,we had a brilliant day, as we did for Christmas that year. From that time until August 2003 apart from the odd setback Lewis remained in reasonable good health, we even took him with his brothers and sister to Euro-Disney we had a fantastic time, with loads of brilliant photographs and memories.

Things started to go downhill December 2003, Lewis caught a simple cold, whereas with us a cold is stated 'simple', to him with his condition it is extremely serious. He was re-admitted to Shrewsbury Hospital and it was there during a routine blood test Lewis collapsed in our arms, and stopped breathing. Again back to Birmingham Intensive care, and he was place onto the Super urgent heart transplant list at Great Ormond Street Hospital.

He again amazed doctors and was after only four days of being ventilated back on a ward sitting up, smiling and eating, but obviously extremely sick. We were told his heart was on a knife edge, he could collapse again at any time and he had to remain in hospital until a heart became available. We were there for six weeks, praying for the call to come but nothing. Sadly Lewis collapsed again and was back on the Intensive care, we knew we were running out of time, he was on I.T.U for nearly three weeks, ventilated and on more adrenaline than a child of his age has ever been on. In the last week he arrested six times, three times in one day!

Still no phone call, and the day we had been dreading arrived, we were taken into a side room and told by doctors they could do no more for our son, even if a heart became available Lewis was far too unstable to be moved to Great Ormond Street Hospital. Our prayers had not been answered, our son had put up such a brave strong fight, we are so proud to of been his mum and dad, but still on Tuesday April 6th 2004 our beautiful son died in our arms, he was just two and half years old.

Its still very raw, still very hard, good/bad days, but we refuse to let our sons death be in vain, we intend to keep Lewis's name in peoples memories. So we have opened The Lewis Prior Memorial Fund, we help raise the much needed funds for the two hospitals that did so much for our son and helped give him the two years of life we know we were very lucky to have had.

Shrewsbury Baby Special Care/Children's Rainbow Ward, and Birmingham Children's Heart Unit are the two hospitals, we are an ongoing concern, and been issued with a Registered Charity Number. We make a yearly donation of £500 to Edward House, this donation helps with the upkeep of a room in Lewis's memoryAlso we now make a yearly donation of £500 to Hope House childrens hospice to help with the fantastic work they do there.
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