Haunted by question

[andysmommy]

Is there a way to find online the typical lifespan for a certain congential heart defect? My son has aortic stenosis and it may seem morbid but it haunts me and I want to know. It seems like every time I ask his doctors I seem more confused about their answer. I just want some type of average but I have failed after 18 months of searching to find a clear answer. Is this horrible of me to ask? Is there an answer?

[wendytalbert]

When my son, Joseph, was about a year old I found out that children with one of his heart defects (TAPVR) only 1 in 20 survived to be age 2. Based on this and the fact that he came with several other heart defects I never planned on seeing him grow up. Since that time (15 years ago) I have learned many things. Technology is an amazing thing. Joseph's first two surgeries included the repair of his pulmonary artery, neither of which was successful long term but by the time he was three they were just starting to use stents in cases such as his. Dr. Cowley told us then that they had no idea what would happen with the stent as he grew but that it would work for now. It did work and worked well enough that he never has struggled with his pulmonary artery since (not only that but it was able to be done by catheter instead of opening him up again). I have watched as more and more technology has come forward to make repairing the heart easier and less invasive. Along with this comes the fact that as technology improves so does the life span of those affected by it. Therefore it becomes very difficult for a doctor to predict how long our children will survive. Much of the technology is new and improved and the children it is helping are still growing and living so there is no way to gauge how long they will survive. Also, just because there is an average it doesn't mean that your child will follow that. Joseph is very much alive and healthy at the age of 15 and a half. He also has a brother, Nathaniel, who was also born with multiple heart defects. Nathaniel is 10 and couldn't be better healthwise. Because I had this number that Joseph would only live to about the age of 2 and he soon passed that goal, I learned that Joseph was going to live his life as long as God wanted him to and that there was really no way for me to know how long that would be. I found it easier to focus on enjoying every moment that I was given with both of my boys and to hope that technology would keep ahead of them and be able to help them when the need arose. This came true for us in 2008. Joseph began to have more problems and needed a transplant. We had been told long ago when he was a toddler that a transplant was not possible in his body. We were thrilled to discover that things had changed and there was no reason he couldn't have a successful heart transplant. His transplant was successful and his life is better than ever. It is hard as a parent to not worry about our children but don't forget to just enjoy every moment and put your trust in Heavenly Father, for he is truly the only one who knows what will happen.
Hope this helps a little.
Wendy

[AngelMom]

I think as parents we want answers to help us feel we have some type of control in a situation that you learn very fast that you don't have any control over, which leads to frustration.
When Hope was born with Heterotaxy (HLHS) back in 2000, Scott and I held on to the stats that she was going to be one that made it. In the end you learn that though two children can be born with the same defect(s) they may not respond the same way, as they are individuals with their own plan in life.
Just like Wendy stated, technology has come a long way and what a blessing for those being born today. We were told 9 years ago that Hope would never be a canidate for a heart transplant because she didn't have a spleen, and now today this is no longer the case.
I wish I had the answers for you that you are seeking, I don't, just experience in what we have been through and seen what other CHD families have dealt with. Good news is your are not alone. . .as we all understand. If only we had a crystal ball. . .but then again, that might not be good either. So just try to enjoy each day that you have together.

[KathyW]

Dennis' doctors have always told us he would live a normal life span - so what's normal? We've almost lost him more than once - one time had nothing to do with his heart. I know he has a purpose here and will be here until he accomplishes it. My husband was always optomistic about future medical advancments. I could never envision what advancements could possibly be made. Now (almost 21 years later), I can see how far the technology has advanced and how it will benefit Dennis in the future. I hope you find peace with your situation enjoy every day with your son - they grow up so fast!!!

Kathy (Dennis, 20, aortic stenosis, Ross procedure, pacemaker)

[Tiff-BAV,AS,PDA]

It seems like we are all giving you the same answer, but I hope that might be easier in a way. I as well was born with Critical AS among other defects and my parents were told not to do my first open-heart surgery because it would be a waste of time. They obviously decided to go through with it and it worked until I was 2 when I needed my AO valve replaced. By the time I was 14 I had out-grown that one and needed a new one. After my third surgery my cardiologist told me that they were starting to do research on being able to replace valves through catheters. Now 8 short years later they are actually doing that very procedure in patients. Technology truly is amazing in it's advancments. For most of these babies that are born today with my defect they can have their heart fixed temperarily through a cath whereas 23 years ago I needed an open-heart surgery to accomplish the same thing. Now as I approach my 23rd birthday in a few days I have been told that there is no reason that I shouldn't have a full lifespan. It's also possible that I won't need another open-heart surgery ever again.

Tiff
BAV, AS, PDA, ASC AO dilation, cardiac defibrillator

PS If you still really feel like you want answers I would just try to sit down with your child's doctors and make sure you don't leave until you fully understand the information they are giving you. It is your right as a parent to understand your child's care plan.

[Heart Mommy]

We must think alike... I like knowing someone out there who has grown up, who has struggled but survived... It gives me a strange peace when we bypass or succeed another challenge... I also like knowing things like this because it helps me grieve. I know this may sound very silly, but I grieve over that little half a heart... I think of the things my son won't be able to do and grieve them now so that later when he blows me out of the water because he can, I am pleasntly surprised. If he is slower at reaching them or chooses never to try, I move past it faster because it has already been proccessed by my brain. Meeting Brooke was such a joy, she is a 24 year old HLHS survior with her original anatomy. It is amazing a so inspiring. It felt like meeting a celebrity. Someone who was at a point who could tell me how it felt and what it meant. See I get you! I would try googling it. That is what I did at first.... (Silly Me)

[Brooke]

It seems like we are all giving you the same answer, but I hope that might be easier in a way. I as well was born with Critical AS among other defects and my parents were told not to do my first open-heart surgery because it would be a waste of time. They obviously decided to go through with it and it worked until I was 2 when I needed my AO valve replaced. By the time I was 14 I had out-grown that one and needed a new one. After my third surgery my cardiologist told me that they were starting to do research on being able to replace valves through catheters. Now 8 short years later they are actually doing that very procedure in patients. Technology truly is amazing in it's advancments. For most of these babies that are born today with my defect they can have their heart fixed temperarily through a cath whereas 23 years ago I needed an open-heart surgery to accomplish the same thing. Now as I approach my 23rd birthday in a few days I have been told that there is no reason that I shouldn't have a full lifespan. It's also possible that I won't need another open-heart surgery ever again.

Tiff
BAV, AS, PDA, ASC AO dilation, cardiac defibrillator

PS If you still really feel like you want answers I would just try to sit down with your child's doctors and make sure you don't leave until you fully understand the information they are giving you. It is your right as a parent to understand your child's care plan.

Hi Tiff!
My name is Brooke Fescenmeyer, I am also a congenital heart defect survivor. I was born with Hypoplastic Left Heart Syndrome (HLHS) and am now 23 and healthy. I jump at the chance to meet anyone else with a congential heart condition and would love to learn more about you.
I am currently a second year graduate student at Idaho State University studying speech therapy and I have been married for one year to my husband, Matthew. Thanks for posting to this website and I hope to hear from you soon!