Tuesday, February 12, 2013

A Facebook chat

I had a facebook chat with a friend, rather publicly on a link I had posted. In case this friend is reading, there was nothing wrong with the discussion AT ALL, it just caused me to reflect and think.

I think, and maybe I am misinformed, but I am speaking from my experiences over the last several years... As I said, I think that there are some misconceptions about Congenital Heart Defects.

The heart is very mechanical, for lack of a better word. The fixes for many of the congenital heart defects are also pretty mechanical. When people ask about Bronwyn, I laughingly say that the conditioned wasn't fixed but that she's been jerryrigged. I elaborate that the plumbing of her heart has been adjusted. Now this is a gross over simplification, but, people don't understand the complexity of the situation, so I don't bother most times.

The most common misunderstanding is that after her surgeries she has been "fixed." Well, she has in a way, but not in a cure kind of way. There are some CHDs that can be cured by a surgery but many surgery is just part of the on-going treatment.

Many kids have issues with other areas of their heart of other organs all together.

What I have found tough, is that even if you find a child that has the exact same set of conditions as another on paper, the journey they take can be extremely varied. It is the unknown element. The little missing piece that decides whether a child can flourish despite their condition or whether they struggle.

What this is I for one don't know? I do know that if medical people could figure it out they would. They would love to see ever CHD case be a success.

Do I have answers? No.

It is just part of the complexity of these conditions and it bears discussion. Discussion and awareness are always a good thing! Always.

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