Son with Bidcuspid Aortic Valve.

Stephanie - posted on 11/17/2009 ( 2 moms have responded )

8

20

0

I have a son with a bicuspid aortic valve.he is 12 months old and they said he will at some point have to at least have the balloon procedure. Does any mom's have advice or can tell me their story?

2 Comments

View replies by

Dana - posted on 10/29/2012

3

32

0

Hello, My name is Dana and i was born with this same thing. Im 42 now I had my first heart surgery when i was 4 yrs of age. About 2 yrs ago i started getting sick alot colds,trouble breathing at night. Never thought it could be my heart. And no insurance so i was limited to what i could do. Well my husband got good insurance with his new job. And I finally went to see doctor. My Aorta ballooned out 5.6 centemeters,and there was very little flow threw my aorta. On july 24,2012 at 5am I was rushed to the operating room for surgery. I wanted to wait ontill monday to let my family know if i had my Aorta would of dysected and i would of died instently. Im recovering very well now and taking day by day. Now im sure you find yourself questioning what you could of done so your baby wasnt born with this. The answer is NOTHING my mom went thew yrs of blamming herself. When in fact 3 out of every 1,000 babys born today are born with this. It happens between weeks 12-14 in the woumd. And more boys are born with this then girls. That my storey and the reseach i had studyed on this.Because I sat and cryed many night crying myself to sleep asking god why this happen to me. Your incharge of your sons health care. Dont feel bad to seek out other doctors its your right. I hope I answered some questions. And good luck with your journey. Your son will be fine. God will take care of him. Dana from ILLINOIS

Katie - posted on 07/08/2010

10

36

2

So this comes as a way late response to your post. But I am starting to do more research about my son's condition and want to hear as many similar stories as possible. My son was born with a heart murmur that was quickly diagnosed as Aortic Stenosis. He had to have the balloon procedure done at 2 months. It was weird because we did not notice anything with him that indicated something was wrong, but we had gone to the doc and he did the eco and said that with the measurements, if we did not do something now (the balloon thing) then we would see symptoms. I sure didnt want to see him turn blue, so we went through that at 2 months. He was under anestethic for 2 hours, recovered quickly, and seemed to be just fine. They ran into a common complication with the procedure in that they tore something a bit causing a slight regurgitation, but they said that this just meant that they would not be able to do another balloon procedure, which was something that was just prolonging the time needed before having to do a full valve replacement.

Our doctor believes that Tanner is a great candidate for the Ross procedure where they use his pulmonary valve in the aortic position and get a donor pulmonary valve. They say that the best results are when the surgery is done between 2 and 4 years. Obviously wanting to wait till closer to 4 years to be bigger and stronger. Tanner now 15 months just had his appointment and the doc said that it looks like he will need surgery closer to the 2 year mark. But again, we dont see any signs that he is not doing well... so its hard to think he needs to have his chest cut open and his heart worked on. We (my husband and I) are starting to do more and more research and are likely to get a second opinion. Its just so hard to believe something could be wrong with him. He seems so normal. I dont think about it most days - and thats the best thing for me now.

So how are you and how is your son?

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms