Friday, September 01, 2006
Blue baby blue
We got a call last night, from our best friends remaining from my training time in San Francisco. "We've had a tragedy in our family," L said. Immediately my wife, Judy, thought of their newborn grandchild, a few weeks old. But it was A, their first born son, who died suddenly, in his thirties.
We'd known him since birth, when he arrived in the world blue and scrawny, suffering from transposition of the great vessels, among the most complex and disastrous of the potentially survivable congenital heart conditions. Then, his life was saved by a daring procedure, creating a hole between the two upper chambers of the heart: in itself a dangerous condition, but necessary in this case to get blood from his lungs to his body, which otherwise would have run in two separate circles -- one back and forth between heart and lungs, the other from heart to body, exhausting its oxygen without replenishment. A had been a sad little baby, squeaky and blue as his baby blanket, lips purple; not growing much, squatting to breathe as such kiddies typically do.
Forced to languish until he'd gotten big enough, he went with his parents at about two years of age to Birmingham, where there was a surgeon who'd had the greatest success on the planet in fixing these kids. Amazingly, the head of heart surgery at UCSF had the audacity to express hurt that J and L hadn't had him do the surgery: he who'd done exactly two, and they'd both died. (Readers of my book would have plenty of reason to side with J and L in their decision.)
The operation is ingenious, and complex -- and now has been replaced by better methods, done right at birth. But it worked. It's hard to give a word picture: imagine (understand that I'm no mechanic) taking the exhaust manifold off your car, and laying in a series of baffles to redirect the exhaust from one set of pistons to the exhaust pipes of another, and then replacing the cover over the baffle. In the case of this operation, a window of tissue is cut away from the sac around the heart (the pericardium) and used as the baffle. And in A's case, it worked great.
A took off, as they say, like a weed. Making up for lost time, and in the pink, he grew and thrived. In grade school, he was a regular on a local TV station, giving kid editorials. On one, ahead of his time, he demonstrated how much sugar there was in breakfast cereal by pouring milk over a bowl of Snickers Bars. When Judy was pregnant, and J and L kept asking us what the name would be, A suggested "Freshwater." He loved the Tintin books, and in one, the captain had referred to 'freshwater swabs." Freshwater Schwab. For many years, whenever we'd talk with a member of that family, they'd ask "how's Freshwater?" Eventually, A moved to New York City, where he became somewhat of an icon amongst a particular niche of the music scene, a favorite DJ for a certain crowd, and writing reviews of music clubs in the Village Voice. He worked for a while for a record producer, one that made vinyl records for the super-audiophile.
But he was his own man, and despite his parents' urging, refused to see a cardiologist after he left home. L tried every way she knew; even more ardently when a recent report came out on sudden death among people who'd had his operation years ago. They saw him through his toughest times, helped him to live a normal life without fear, and he did.
J and L are scheduled to be here in a couple of weeks: he's to give a special lecture at the medical school, and is the guest of honor at a fancy dinner. I guess it's too big a deal to cancel. So we'll be seeing them soon.