Friday, August 27, 2010

Liam: 6 -- Backwards heart: 0

Six years ago I was lying in a hot, airless hospital room in Germany, nine months pregnant with a baby I was told I would never be able to conceive. My blood pressure was steadily rising, and since I was full term, the German doctors decided it was time for a C-section.

I was wheeled off somewhere to be prepped for surgery. And shaved. There's nothing quite like a large German nurse wielding a Bic razor on your nether regions in a dark room deep in the bowels of a German hospital.

Finally I was brought to the operating room and Liam was born.

But I didn't get to see him. They stopped next to me with him for about three seconds--just long enough to touch his leg. Then he was whisked away to a different room. I assumed it was just how Germans did things.

And a few minutes later they called Will in to another room. After that it's all a little foggy. I've been told that Will came back in and told me that Liam was having trouble breathing (the understatement of the century). And apparently I freaked out, so the anesthesiologist sedated me. Heavily.

I don't remember anything after that. The next thing I do remember is being in another dark room on my hospital bed. Someone must have told me what was wrong with Liam because I was hysterical, but I don't remember when that took place or who told me. But I knew that he might die, and they wouldn't let me see him.

I begged and begged Will to make them let me see him. He asked, but I wanted him to insist. And I was mad that he wouldn't insist.

And then I was told that Liam would be transferred to the cardiac unit in another hospital, in another city, in a few hours. And they still wouldn't let me see him.

I hadn't seen him, and they were taking him away, and there was a very good chance that he could die.

I alternated between being near catatonic and not wanting to see or talk to anyone, and screaming that Will had to make them let me see him.

Finally they gave in and wheeled my hospital bed to the NICU just a few minutes before they transported him to the other hospital.

He spent a week at that hospital, getting just enough oxygen to not be brain damaged. The surgeons there had a plan to fix him, they told us, but he would probably require a heart transplant at some point.

Unbeknownst to us, one of the German surgeons confided in the American cardiologist who was working with us, that the surgical team didn't think he'd make it out of surgery alive. So, the American doctor made some calls and found a surgeon in Philadelphia who thought he might be able to do something, and if it worked he probably wouldn't need a heart transplant in the future.

So, we were hastily put on a med-evac flight with soldiers wounded in Iraq and flown to Washington DC. We stayed one night at Walter Reed Army Medical Center while we waited for a bed to open up in Philadelphia. During that night, some lab work came back abnormal and they discovered that in addition to his heart defects, he only had one kidney and it was deformed. Luckily, it's fairly common and not usually troublesome.

The next day Liam and I flew in a helicopter to Philadelphia and Will and Ben took the train. We set up camp at the Ronald McDonald House, and a team of surgeons met to decide what they were going to do.

A few days later they operated and it was a success. Sort of.

They had re-routed everything in his heart and replaced his faulty vessels with donor vessels, but his oxygen was still too low. They discovered that one of the stitches from the surgery had ripped a new hole in the septum of his heart. So, that meant open heart surgery number two, where the hole was repaired with a Dacron patch.

This time, complete success.

A week later we went home.

We were told he'd need another surgery by one year to replace the donor vessels. They came from cadavers, so they wouldn't grow with him.

A year came and went. Then two. Then three. And four. And five. And today he's six, and still hasn't needed another surgery. It's coming, though. We can't avoid it forever. But to make it to six on the replacement parts put in at one week old is rather miraculous, according to all the cardiologists he's had.

The fact that just two years before he was born, a Japanese cardiac surgeon developed a surgery that could correct a defect with the level of complications that Liam's had is also pretty miraculous. And then add to that the fact that the surgery had only been done four times ever, and that one of the only two surgeons in the world to have performed it just happened to be working at the children's hospital in Philadelphia where Liam's case was sent for a second opinion.

So, today we overlooked the fact that he's on the verge of getting expelled from first grade, because he's here.

Every birthday is a little miracle.

Tonight he used some birthday birthday money to buy himself a new heart--Iron Man's heart. You know, just in case.

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