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Clarifying Confusing Research Information

This article appeared in the June 1, 1993 issue of SYNOPSIS, the Newsletter of the SIDS Alliance. It appears here almost verbatim, with only a couple phrases changed in an attempt to update the information.

What do sleep position, kidney disorder, passive smoke exposure, and Munchausen Syndrome-by-Proxy have in common? If you've been watching television news or reading the daily papers over the past several months, too many of the promotions and headlines will have you think that each and every one is a cause of Sudden Infant Death Syndrome.

What next?

"The public has been on an information roller coaster, the result of an explosion of medical reports, each heralding a 'breakthrough' in SIDS research," muses Tom Moran, President of the SIDS Alliance. "We need to help people separate myth from fact and risk factor from cause."

What follows is a summary of some recently publicized medical reports and our interpretation of their impact:

bullet The American Academy of Pediatrics recommendation that mothers position their babies on their sides or backs during sleep was based on a review conducted primarily in New Zealand, Australia, and the United Kingdom. All experienced reductions in SIDS rates from levels twice that of the U.S. It is important to keep in mind that while there is no data indicating any harm in placing an infant to sleep on its back or side, the actual risk of SIDS for an infant placed on its stomach is still extremely low. Therefore, we must ask, why is the rate of SIDS so much lower in the U.S. where the prevalence of prone sleeping is so high, and to what degree would a change in sleep position affect our rate of SIDS? Only carefully conducted studies in the U.S. will provide us with the facts we need.
bullet A study released in the May issue of Pediatric Pathology links nephron deficiency, a kidney disorder, to a number of infants who "died of no known cause." Attention to the researcher's work in England stimulated premature coverage by the U.S. media. Findings from this study will be evaluated by our Medical and Scientific Advisory Council (MSAC) once the paper is published. Given the circumstances, we can only maintain an open mind about the significance of this work.
bullet A study conducted by the National Center for Health Statistics has demonstrated that infants are three times more likely to die of SIDS if their mothers smoked both during and after pregnancy, implicating passive smoke exposure as a risk for SIDS as well as respiratory disease and other ailments. SIDS Alliance medical advisors support wholeheartedly the authors' call for "smoking cessation among pregnant woman and families with children," but caution against confusing a risk factor as a cause for the syndrome. Smoking, in and of itself, is not the cause of SIDS. The cause of SIDS remains unknown.
bullet Television reports on Munchausen Syndrome-by-proxy, including off-the-cuff comments back in April by an anchor on 20/20, suggest that many babies who die of SIDS may be victims of Munchausen Syndrome-by-proxy. (To 20/20's credit, a recent re-broadcast of this piece corrected this misinformation.) This is a disorder of parenting and a form of child abuse, in which a parent creates a fictitious illness in his/her child to gain the attention of doctors and nurses. Munchausen Syndrome-by-proxy may involve physical injury to the child or suffocation mimicking "apneic spells," sometimes causing the child to die. SIDS and infant apnea are naturally occurring events; they are not a form of child abuse. Relatively few deaths attributed to SIDS are later discovered to be due to intentional trauma. It is much more common for SIDS parents to be unfairly suspected of abuse and neglect, compounding the tragedy they have already experienced.

When it comes to media coverage of SIDS, we often feel a sense of frustration in being confronted with misleading headlines, announcements of so-called breakthroughs and statements taken out of context. The Medical and Scientific Advisory Council of the SIDS Alliance is sensitive to stress caused by these reports, and responds in a professional and timely manner with organizational positional statements aimed at clarifying key points and putting them into perspective.

"Longing as we all are for news of a major breakthrough in the realm of SIDS research, we must proceed with high hope tempered by caution. We must continue to support scientists seeking solutions through the NICHD's Five Year SIDS Research Plan and programs funded privately through the SIDS alliance if we are to find real answers to the many mysteries of Sudden Infant Death Syndrome," concludes Moran.


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