Sunday, November 12, 2006

    SIDS and Seratonin

    When our oldest son died in 1963, we were told his sudden, unexplained illness was "crib death." After pushing the pathology report across the desk of more doctors than I care to remember, I was told that it was an overwhelming viral pneumonia which can kill even adults if the immune system happens to be briefly impaired. Meanwhile, the medical community came up with a term for babies that go to bed healthy and never wake up--"sudden infant death syndrome," or SIDS. The new name didn't help much, and the causes of SIDS remain unknown, almost 45 years later.

    Even though I know that our son's pneumonia was not within the SIDS range of causes, I've always kept my eye on the research, because the horror and emptiness of suddently losing a child gives me common ground with parents of SIDS babies. And although there have been major break throughs in all manner of diseases, and new diseases have cropped up we'd never heard of in the 60s (change the letter S to an A, for instance), there are still no answers for SIDS.

    So I read with interest "Multiple serotonergic brainstem abnormalities in Sudden Infant Death Syndrome," in a recent JAMA (vol 296, no. 17, p. 2124) about research that links levels of seratonin in the brain which influences breathing, cardiovascular system, temperature and the sleep-wake cycle and sudden death. The editorial writer (p. 2143) praised the research in this field, done both in Japan and the U.S., but quickly wanted to move on to racial and socio-economic factors. There is a higher incidence of SIDS among African-Americans, Hispanics, Native Americans, but particularly boys. Also, there have been aggressive "back to sleep" education programs to teach parents not to put babies down to sleep on their tummies, or in a bed with someone else, or exposing them to cigarette smoke. The rate of SIDS has gone down since the implementation of sleep safety programs.

    Unfortunately, the controls used in SIDS research are children who have died of other causes--diseases, accidents, or trauma. And the SIDS babies data comes only from those parents who have allowed tissue samples to be used from their dead child. So this skews the results right there (in my opinion) because only California has a law that renders it unnecessary to obtain informed consent from the individual parents if tissue samples from their child are to be used for research on SIDS. So you've got a small group to start with (2162 infants died of SIDS in the US in 2003), with a pretty small sample, from a rather narrow geographic area.

    I know nothing about medical statistics or how to figure risk factors or statistical anaysis. I could barely make my way through the "density of medullary 5-Ht neurons." However, I'm not in favor of parents being required by law to submit samples, or even have an autopsy, so we can have a more diverse racial data base. It's quite possible that most grieving parents will want as much knowledge as possible and many will want their child's death to make a contribution to science, but when laws are passed requiring you to take part in medical research, we've gone too far.



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