Robert X. Cringely's baby, 74-day old Chase, died of SIDS this
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 past.....it will be his
friends and fellow FoRKers:
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
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