baby with heart disease

[jennifer1978]

My daughter is 9 months old and was born with dextrocardia, pulmonary atresia w/ vsd. I take her for her monthly visits to her cardiologists. She gets an echo every time we go. This last time we went I was told that the only working vein that she has going into her heart has a leak. He said as long as it did not get any worse that it would be ok. This has got me really worried. She has had 2 heart surgeries one was for a BT Shunt and the other was for a Glen and she had to have a patch on her pulmonary arterie. I just want to know what will happen if the leak gets worse and what can be done to fix it.

[JaymieX]

Hi Jennifer.
My name is Jami and I'm 19 years old.  I was also born with pulmonary atresia.  I have had 3 open heart surgeries, including both the BT Shunt and the Glenn, also.
If your daughter's heart is leaking, I'm sure there is something they can do to help.  I have had issues with valve leakage, and I have had a pulmonary valve replacement.
I'm not sure what they can do for your daughter, but since I have EXTREMELY similar issues, I thought I could help somewhat just by letting you know that I've had very serious issues and here I am many years later alive and doing very well.
Doctors know what they are doing and it is their job to save lives, and they do it daily.
Just remember that if God brings you to it, he'll get you through it.

[momtofourboys]

I am sorry that I can't help you with your question. I want to wish your daughter the best of luck as well as you. I can totally understand you worries. good luck and she from what I can see looks so beautiful yet fragile
michelle