Death by another name

Medical experts agree that it is a positive development that coroners are increasingly identifying deaths from threats to breathing. These are children who suffocated from bedding and clothing or who were smothered accidentally by another person who was sleeping in the same bed and rolled over them.

Several states have passed legislation ordering a death scene investigation if an infant dies mysteriously. As a result, the percentage of infant deaths determined to have been caused by "threats to breathing" has risen from just 4 percent in 1992 to 16 percent in 2004.

Dr. Henry Krous: If there were a cavalry that rides to the rescue of grieving parents of infants who die suddenly and unexplainably, it would be in the unlikely form of Dr. Henry Krous, a pathologist and director of the San Diego SIDS Research Center. But authorities are alarmed by the growth in indefinite "undetermined" causes of death, a vague diagnosis that often is painful for parents. Scripps found these ill-defined diagnoses have risen from 16 percent of all sudden infant deaths in 1992 to about 30 percent in recent years.

"A lot of us are concerned that the rate (of SIDS) isn't decreasing significantly, but that a lot of it is just code shifting," said John Kattwinkel, chairman of the Centers for Disease Control and Prevention's special task force on SIDS. "We don't know where the best place is to put our emphasis on further reducing the risk of SIDS. It is still a very high killer of babies."

The danger is that medical researchers can't trust the causes listed on infants' death certificates, clouding hopes for a solution to the mystery of SIDS -- and also masking other risks to babies.

"We are told that physicians should first do no harm," said Dr. Henry Krous, a prominent child pathologist and director of the San Diego Sudden Infant Death Syndrome Research Project. "But we need to be aware that we can do harm by using terms that don't gain anything to the understanding of this disorder."

Among the other findings of the Scripps investigation:

• In some states and counties, investigators are told not to issue a SIDS diagnosis if any other cause is suspected, causing the rate at which the syndrome is reported to the Centers for Disease Control and Prevention to plummet to just a fraction of the national average. Several large metro areas reported no SIDS cases during the five-year period even though there were dozens of sudden infant deaths.
• Other jurisdictions offer extra pay to coroners who fill out complex medical forms detailing the circumstances of sudden unexplained infant deaths. Some have reported as much as a 55 percent increase in SIDS deaths since the incentives began.
• The variance in diagnoses can be equally great within the same state, so that one county is diagnosing SIDS at three or even four times the rate of its neighboring counties.
• States with local and state boards assigned to review the evidence in mysterious infant deaths are three times more likely to identify children who have died from suffocation or smothering than do states with little or no oversight in child deaths.
• The 28 states that have statewide medical examiners are more likely to diagnose SIDS deaths than the 22 states without a top medical examiner.
• States that mostly rely upon appointed, well-trained medical examiners to investigate infant deaths issue 10 percent more SIDS diagnoses than states that elect often less-well-trained coroners, many of whom are not required to have college degrees.
• Coroners, who generally are not required to be doctors or even have any medical background, were 37 percent more likely than medical examiners to issue a diagnosis of "undetermined causes" on the death certificates of infants.

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