Kido with bicusp aortic valve

[Sagebrush]

Hi from Idaho!!!

Hi from Idaho!!!

I just want to put in my 2 cents!!! BAV is the most common birth defect....the second most common birth defect is cleft pallet and I am so sorry she has both. The reason I say this is because I want to stress how very important it is to go to a cardio that specializes in "congenital Heart defects". The doctors use to tell us congenital heart problems patients that we were fixed once we had surgery....but we are not fixed!!! Please see a specialist so Jessica won't have to endure as many surgeries as I have and become a guinea pig like I have...because my pediatric cardio told my parents after my first heart surgery that I was fixed.....and I have gone through 2 more surgeries !! I was told by the top congenital heart specialist in this country that the balloon procedure doesn't work on opening up narrowed valves because my former pediatric cardio did the balloon on my valve too. If I have been to a congenital heart specialist sooner like 10 years sooner I probably would not have the left side of my heart enlarged. I do not write this to scare you I just want you to have enough information to give Jessica the best life possible. Please visit www.achaheart.org for more information about us congenital heart patients and to find a specalist.

 

[OzAnnie]

Just want to say Hi

Just want to say Hi

Hi Pat
I thought I would just say Hi, I am also new to the board. My son is 10 months old. He was born with a cleft lip / anterior palate and aortic stenosis.

We have had one balloon done at 3 months old but unfortunately although the stenosis has been relieved the valve is damaged and leaking. We have been told that he will require open heart surgery to either repair or transplant the valve. They can do no more with the balloon for my son. He is on medication (ACE inhibitor)3 times a day. I go to my appointment next week and hopefully will have some more information ( I am sure I will be posting asking for some advice). My son has no symptoms has had his lip repair done and is happy as.

Anyway I just wanted to say HI and I hope everything goes well with Jessica.
I guess we have an extra concern with our childrens teeth. My son will require alot of orthodontic work as well as a bone graft done when he is 10. I guess it will be one big round of antibiotics! Take care