National standards needed to fix SIDS quagmire

(10/12/07)

URL: http://www.shns.com/shns/g_index2.cfm?action=detail&pk=EDSIDS-10-08-07

An editorial / By Dale McFeatters

Scripps Howard News Service

2007-10-08 00:00:00

Perhaps there is no crueler misfortune to befall a family than to have an otherwise healthy infant suddenly and mysteriously die in its sleep.

In 1969, the death of a baby suddenly and without warning was formally given a name, SIDS, for Sudden Infant Death Syndrome, and began attracting the publicity, congressional attention and research dollars so typical of the American response to medical issues.

In the early '90s, the "Back to Sleep" campaign was launched to persuade parents to have their newborns sleep exclusively on their backs. And the campaign appeared to have dramatic results, with authorities claiming that by 2004 SIDS deaths had fallen by more than half.

But an investigation by Scripps Howard News Service reporters Thomas Hargrove and Lee Bowman casts deep doubt on the accuracy of those figures. Because of sloppy procedures, manipulation of statistics and lack of standardization, the success of public health efforts against SIDS has been substantially overstated.

The harsh fact is that while deaths attributed to SIDS appear to have fallen dramatically, the overall number of sudden infant deaths has declined only slightly. Researchers believe that much of this apparent reduction is only on paper, what is called "code shifting." Instead of a diagnosis of SIDS, the death certificates now often list other, vaguer causes such as "threats to breathing" or simply "undetermined cause."

That would explain why 15 years ago SIDS was listed as the cause of 80 percent of sudden infant deaths versus just over 50 percent today. It also explains the wide disparity in SIDS diagnoses -- North Dakota reports four times the rate of New York -- and suggests that a finding of SIDS is often a function of geography, not medicine.

This is not just a matter of keeping the paperwork straight. Faulty reporting masks the extent of the syndrome and accurate figures are essential to best direct the millions of dollars of private and public money funding research into unexplained infant deaths.

A critical first step is clear, uniform national standards for investigating and reporting infant deaths with federal funds as an incentive for state and local governments to adopt them. And for oversight, there should be national standards and incentives for state and local child death review panels to regularly scrutinize reported causes of death.

The first step in solving a problem is to understand it, and it's clear from the reporting of Hargrove and Bowman that we don't know as much about SIDS as we thought.

(Distributed by Scripps Howard News Service, http://www.scrippsnews.net)