Mangled Hearts

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Eight years and a couple of weeks ago I had a baby. She was perfect– except for the critically imperfect heart. Whisked away to the main Duke Medical Center, she underwent an emergency procedure on her walnut-sized damaged organ. We followed her there as soon as I could discharge myself, and we met the team who would save this tiny life. As the strikingly young and handsome doctor briefed us before the surgery, he began with the harshest of words: Your baby might die.

There I was– bleeding, swelling, sweating– with head spinning. Would you believe that over the course of the next hours I actually tried to convince myself that it was OK if she didn’t make it, because I never had the chance to know her anyhow? I’d like to chalk this up to postpartum delirium and circumstantial trauma, as opposed to terrible parenting and awful moral character.

Handsome Doctor emerged to update us that the procedure went as well as expected (weeks later we learned that this was his youngest patient yet– that normally this procedure isn’t done on babies only hours old). He had been cautious, and projected he would need to go in for a second attempt within a couple of weeks or several months. For now they’d watch and wait.

Later in the evening we went to visit our daughter– of whom we couldn’t see very much behind the tubes and wires. Clad in a tiny diaper and a purple cap with two pink hearts, she was sedated, intubated and medicated. But that little heart was beating. We couldn’t hold her, but we touched her and marveled at her– just as any new parents would. Days later, when she was at last no longer sedated, she broke free from the swaddle and ripped at her tubes. At that moment we knew we had a fighter.

Despite some additional complications, which included a giant blood clot, we brought her home eight years ago tomorrow. We’d have to inject her twice daily with blood thinners (yes, right there on the kitchen counter) and we’d be in and out of the hospital and doctors’ offices for months. But there she was, and here she is, a fighter still.

Each year around Christmas I send off two holiday cards– one to the doctor from North Carolina and another to the New York cardiologist who performed the second repair. I know not whether they actually receive the notes, or even if they care to. Nevertheless, I include a photo and a brief update to document their masterful achievements. Not only did this child survive, she has thrived. From swimming to skiing to snowboarding to horse back riding to playing tennis to bike riding to skate boarding to competing in triathlons, this kid has no limits. Imagine what she would do with an undamaged heart?!

Also each year on her birthday I bake a cake, as does any parent. But mine is always in the shape of a heart. I have a compulsion, I suppose, to make whole what I originally created as flawed. This year, the cake didn’t quite slide out of the pan, and we were left with yet another mangled heart. There were some tears involved, until we reminded the guest of honor that her own heart doesn’t look so pretty but it gets the job done. She’s old enough to know that she has a special heart, one that goes lub-dub-squish, and that we love this about her.

Our little girl has a heart of infinite capacity. It’s imperfectly perfect.

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