www.pbs.org/cringely/pulpit/pulpit20020425.html
APRIL 25, 2002 Chase Cringely Finding Meaning in a Lost Life By Robert X. Cringely Chase Cringely sounds like the name of a NASCAR driver. 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. 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. 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. But Chase, who was a good-natured kid with a pumpkin head, was not abused. 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. 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. 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. If current monitors won't work, I want to make ones that do. 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. I need hardware engineers, software engineers, I need people experienced with biomedical sensors and sifting mountains of data. 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. 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.
|
http://csua.com/feed/