Searching for meaning after a tragedy

Mike points me to this article by Robert X. Cringely, who lost his infant son to SIDS last week, and what he hopes to do about it.

There ought to be a monitor, I thought, that could tell when a SIDS attack was about to begin. In the neonatal intensive care unit, where Chase spent his first few days, there are lots of monitors and they go off when they detect apnea — a cessation of breathing lasting for 20 seconds or more. Chase had a problem with apnea. Twice he turned blue right in my arms, simply forgetting to breathe. The treatment for apnea is literally shaking a leg, reminding the kid to take a breath. The cure for apnea comes with age, and can be helped by treating with caffeine. A double latte for my baby, please.

But to the medical establishment, apnea isn’t SIDS. If apnea is falling asleep at the wheel and driving off the road, SIDS is falling asleep at the wheel and driving into a bridge abutment. The doctors tell me leg shaking won’t end a SIDS attack and monitoring won’t detect one.

Still, as a grieving nerd, I feel the need to do something. And I am not at all convinced that epidemiologists are to be trusted in this. After all, they are medical statisticians and mainly play the odds. I want to defy the odds. If current monitors won’t work, I want to make ones that do.

So here is what I propose. It is my plan to devote much of my resources and a good portion of the rest of my life to combating SIDS. I can’t cure it, but I think I can help babies to evade it. The trick is to first develop a very cheap, very accurate, recording medical sensor.

I wish him well, and I hope I’ll never have that kind of incentive to do something.

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