Q & A's

When explaining Jack's condition to people who find out or ask about it, I've sort of developed a script. It's so mechanical and rehearsed it almost comes out on cruise control. It usually starts with "He has hypoplastic left heart syndrome" and that alone, leaves people dumbfounded. I skip over the actual meaning of "hypoplastic" and immediately proceed to lamen's terms, "he has half a heart."

If people are actually interested in the details, they will ask which half- which leads me down the road less traveled, using big words like "aortic and mitral valve stenosis" to which some people actually are familiar with. I usually let out a sigh of relief in this case, because I know they really understand the gravity of the situation and I feel more connected to the conversation.

Unlike my other speech, which goes "His left ventricle didn't develop, so he had to have a few heart surgeries to re-plumb the one good side he DOES have." Typically, the next question is "Is he OK now?"

I have a heard time with that one, I feel like saying "UM, NO, he has a two-chambered heart with a bunch of gortex stuck around it and I go into his room every night to make sure he is still breathing after he falls asleep..."

But instead, I say "Well, for now... yes he is OK."

Then, the question that will probably haunt me for as long as I live comes next:

"So will he eventually have to have a transplant?"

Suddenly I'm taken out of my body and put into scrubs and I feel like a cardio thoracic surgeon sitting across from a very nervous set of parents asking if their heart baby will need a heart transplant. The truth is I don't know, I certainly HOPE not... but I suppose it is always a possibility. It never was on my list, heart mom's know the list.. "Deliver baby, Norwood, Glenn, Fontan, BREATH AGAIN." Transplant wasn't ever an expectation. But every time I get that question I am flung into reality with the fact that it could happen.

Something I hold onto was when Dr. Hawkins told me that the one side of the heart that Jack does have is a really good one; strong and healthy. I hold onto that with everything I've got and when I feel the heart beat through his broken chest I believe him, because I can feel it. But if I leave my hand there too long and feel the beat of his repaired heart I can easily become fearful.

How do you other heart mom's answer these questions? I know it's a part of your life, just like it is mine. We've become very good at delivering the stories that our little heroes have created. I'm interested in how you all feel about them.