Do you, your child, or someone you know have a congenital heart defect?

Thank you for the prayers and offer to listen. It's not often I come across anyone who's familiar with CHD's. It's a shame, too, that with so many people with CHD's in the world today that there is still so little awareness. I'll be sure to read your discussion and post there, too.

Yes it is a shame. I have searched for support groups, but have no luck. Well maybe I should not say I had no luck. As I have found a few but it seems everyone focuses on the negative part of it. When in fact, it's not all bad. There are things that can be considered good. Not about the defects but about daily life. Maybe I should attempt to start one. I could not image seeing a child of mine own going through the things that I watch my husband have to cope with. So I will say you are a strong person if in no other way then that. I was so afraid when I became pregnant the 1st time. But the doctors assured me that my husbands defects were not inherited. ^ children in all and they all came out healthy. Although we do have their hearts checked yearly.

I know what you mean about the support groups. There is only 1 here locally and they're not very active and tend to focus more on the negative rather than the positive, too. My husband and I are in the process of starting a club whose proceeds will go toward CHD research and to assist families whose children are struggling financially because of the cost of medical care or other CHD-related expenses. We're hoping to achieve not-for-profit status so that we'll be able to do more. It's not easy to see your child going through what my son has gone through. He was developmentally delayed from the lack of oxygen and other issues related to his heart condition. Then after his 1st open heart surgery he suffered 13 mini-strokes that seem to have adversely affected his development even more. There are days that it's very difficult to deal with everything, but then he smiles one of his great, big smiles and it just melts it all away.