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The operation is ingenious, and complex -- and now has been replaced by better methods, done right at birth.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.


Intelinurse said...

My condolences as well. The most painful experience as a parent must be when a parent realizes they can no longer control the actions of their "child." How frustrated they must feel in the midst of their grief.

Dreaming again said...

I'm sorry for your loss!

Anonymous said...

im so sorry to hear of the loss. perhaps the speaking engagement can be turned into something somewhat uplifting for the parents, if it cant be cancelled. their son did live a full life, if a shorter one than the rest of us.

Mother Jones RN said...

I very sorry for your loss. I send you my heartfelt condolences.

Anonymous said...

My prayers are with you and "A"'s family.

What a man! He lived his life fully and the way he wanted to live it. And it sounds like it was a very exciting one, at that!

I lost my cousin, Dean, at the age of 25 to heart trouble he had since childbirth. Like, A, he lived his life his way.

Dean was told to live at sea level and instead chose to keep living in the Nevada mountains where he was born.

And he never once let that heart condition keep him down.

Again, my condolences on the loss of "A".

Freshwater Schwab? The man had a great sense of humor!

Gary M. Levin said...

Sid, this is a poignant story about your friend's loss, and obviously your own as well. I speak from experience in that we have a son who is now 19 who has had cystic fibrosis. The fear is there on a daily basis, but he has been a joy to us even with the challenges and re-direction of my life as an ophthalmologist. Who can say who or what lives L touched and what they gained from knowing him.....One never knows. How wonderful of you to memorialize him and share
Gary L

Anonymous said...

I had Transposition also, and had a Mustard, which I presume is what you're describing here. I'm 34, finished medical school, surgical residency, fellowship and am now an academic surgeon in a reasonably sized hospital.

Despite telling my patients endlessly to go see their doctors, I have failed to follow my own advice and have not seen a cardiologist since medical school.

Why? Partly because I feel fine and other than some exercise intolerance, I get around daily life with no difficulty. However, I'm sure I also don't really want to hear what they might have to say. Sometimes ignorance is bliss.

I've read the studies on sudden death post Mustard and honestly, they scare me to death. It's a bit odd living life with a very real understanding of your own mortality. I don't think the average person quite feels that same way.

I try to live a full life and not think about these things, but it's not always that easy. For whatever reason, I find myself wondering if it's really a wise financial decision to be putting money into a 401(k) that I probably statistically will never be able to withdraw from. Odd the thoughts the human mind inflicts upon itself.

I think your post has convinced me that I should get some followup care done. Right after I get my life insurance and disability paid up....

Sid Schwab said...

Anonymous: I gather the question is whether to get an AICD. Not an easy decision.


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