Little Hearts

Bill, born 1965

My name is Bill and I was born with Tricuspid Atresia in 1965 and doing great. I had a Glenn in 1967, before the Fontan was being done. In 1976, I was one of the first 100 people to get the Fontan. My last surgery was a revised Fontan in 1999.

I joined Little Hearts to give some support to parents whose children face many of the same issues I have. Parents say they always look to the older ones and I'm happy to be there as a source of encouragement. They have, in turn, inspired me. I've become more aware and grateful for my parents and what they faced.

People have asked for advice from my years with CHD. Here are my top 4:

1  - Something common to adults with CHD is ignoring their condition when feeling good. The most dangerous attitude is, "there's nothing wrong with me."

2 -  You are your child's best advocate. Be as knowledgeable as you can be. Educate them about their own condition so they may be their own best advocate as they grow up.

3 - In crisis time, take things as they come. I don't look too far ahead and don't anticipate too much. I just deal with what's in front of me at the time.

4 - I personally feel, as much as CHD has taken from me and my family, it's given at least that much in return. Because of this defect and everything that goes with it, we CHD "children" and our parents are given the blessings of having the opportunity to develop a much deeper appreciation of life, love, God and the experience of each other, than we otherwise might have.

Story by Bill - New Jersey and founder of and

Ewan, born 2004
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