Robert X. Cringely's baby, 74-day old Chase, died of SIDS this week

B.K. DeLong
Thu, 25 Apr 2002 16:18:48 -0400

...and if anyone can help him in his crusade to lead a project to make 
low-cost monitors to help make SIDS a thing of the will be his 
friends and fellow FoRKers:

Chase Cringely
Finding Meaning in a Lost Life

By Robert X. Cringely

Chase Cringely sounds like the name of a NASCAR driver. Chase Cringely was 
my son. He died this week after 74 days of life, a victim of Sudden Infant 
Death Syndrome (SIDS). He literally stopped breathing lying in my lap while 
I did e-mail. There was no sound, no struggle. I just looked down and he 
was no longer alive. I have no idea whether he had been dead for one minute 
or 10, but we were unable to revive him. He was never sick, he just died, 
and now there is a void in our lives that we can never fill.

Maybe it is inappropriate for a columnist to write about such things, but 
the only power I have is this bully pulpit, and it just wouldn't be right 
to not use it to ensure that Chase's death accomplishes something.

SIDS is a condition that is little understood. Little babies just stop 
breathing. Other conditions are sometimes mistaken for SIDS, the most 
common being child abuse. Little babies just stop breathing because their 
parents or caregivers have murdered them. This explains the Sonoma County 
Sheriff's visit to my house at 3 a.m. But Chase, who was a good-natured kid 
with a pumpkin head, was not abused. He just died.

SIDS was a popular medical research subject from 1985 to 1995. In those 
years, parental abuse was finally identified as a common cause, and certain 
techniques were developed to help babies stay alive. The most common 
technique was to remove all blankets and toys from the crib, and to keep 
the baby on his back. Babies who sleep on their stomachs are twice as 
likely to die of SIDS. Sleeping solely on their backs reduces the incidence 
to about one in 2,000 babies. But strict back sleeping also has a 
developmental downside because apparently the route to genius is best 
traveled on the belly.

There have been few advances since 1995, and this very lack of progress has 
led to reduced interest in SIDS research. Yet my unblanketed, backsleeping 
little Chase died anyway, so I think there is much that could still be 
done. The old, broken-down engineer in me says it is time to build something.

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 imagine a $10 device that can be strapped or stuck or otherwise attached 
to, 100,000 little babies, measuring and recording respiration, heartbeat, 
body temperature, and anything else we can think of. At least 50 of those 
babies will die of SIDS, but through the use of these monitors, we'll 
gather more SIDS data than has ever been gathered before. And rather than 
follow the traditional scientific method of first stating a hypothesis that 
we prove or disprove, I want the data to speak for itself. I want to get 
the best rocket scientists on Wall Street to apply their neural nets and 
other tools to divining from all this data a real leading indicator for SIDS.

It can be done, and once it is done, we can reprogram those same monitors 
into devices that actually CAN predict SIDS and help to prevent it, either 
through detecting babies most at risk or by literally predicting the onset 
of SIDS in time to evade it.

That's my plan, but I can't do it by myself. I need your help. I need 
hardware engineers, software engineers, I need people experienced with 
biomedical sensors and sifting mountains of data. I need folks who make 
tiny processors and RAM chips. I need people who know more about this stuff 
than I do. Yet they must also be people who are willing to believe that 
there is an answer, since the medical establishment seems to have given up.

Nobody will make money from this, but everybody will benefit. Whatever we 
learn will be given to the world for free.

I won't write about this again, but if you can help in any way, I urge you 
to contact me so we can start to find even a little bit of meaning in 
Chase's death.

B.K. DeLong
617.877.3271               Play.        Potter.                       Security.     Herb.