Uneven approaches

The lack of standardization has created wide disparity among the states -- and within the states --- over how sudden infant deaths are investigated and recorded.

Some states are reporting improbable declines in SIDS cases. The nation's largest drop occurred in the state of New York, which averaged about 240 cases of SIDS a year in the early 1990s and reported just 23 cases in 2004.

"Honestly, I can't explain this," said Marie Chandick, director of the New York State Center for Sudden Infant Death. "The numbers have been creeping down."

Dr. James Kemp: Dr. James Kemp, a St. Louis pediatrician specializes in kids' lungs, and particularly how they breathe and sometimes stop breathing, in their sleep.New York also leads the nation in reporting infants who die of "unknown causes." Of the 869 infants who died suddenly from 2000 to 2004, the New York State Department of Health reported that only 21 percent were cases of SIDS, 74 percent were "unknown causes" and 5 percent were threats to breathing.

"New York state set some new guidelines because there were too many cases getting called SIDS. It was a very clear directive," said Russell B. Lawrence, a veteran coroner in St. Lawrence County where the syndrome hasn't been diagnosed for several years. "Medical examiners and coroners were told to take on more aggressive investigations into these cases."

Scripps canvassed New York local health departments to ask how many SIDS cases they reported in 2004. Only 26 of the state's 62 counties were able to produce an independent count since most counties rely on the State Health Department's computer system for their record keeping. But the counties that could produce an independent count said they had reported a total of 41 SIDS deaths that year, almost double the official statewide tally.

Other states are reporting SIDS cases at a rate well below the national average.

Between 2000-2004, the United States averaged about 8.1 SIDS cases per 1 million population each year. New York reported an average of only 1.9 SIDS cases a year, followed by Rhode Island with 3.6 cases, Massachusetts with 3.9 cases and California and Vermont with 4.6 cases each.

Like New York, California also reported that more than a third of its sudden infant death cases were still "pending" the outcome of medical tests.

Some states have experienced equally surprising increases in SIDS cases recently.

When the Mississippi Legislature passed a law ordering state coroners to conduct death scene investigations for all sudden infant mortalities, the number of reported cases of SIDS jumped from 54 in 2002 to 94 when the new law was approved in 2003.

Jamie Seale, a member of the Mississippi Child Death Review Board, said it is "a widespread problem" that Mississippi coroners and medical examiners in her state are incorrectly diagnosing SIDS cases.

"What we've found in the child death review process is really troubling," Seale said. "About 20 percent of the SIDS deaths are not SIDS but suffocation and rollover cases. We are trying to get the word to the coroners that if it is a rollover death, don't put down 'SIDS.' There is a huge portion of the SIDS deaths that are not SIDS."

Mississippi state officials said there are some hopeful signs. The state recently adopted much more rigorous guidelines for investigating and reporting unexplained infant deaths.

Scripps' analysis found that the more rigorously a state reviews infant deaths, the more likely the cause of death will be declared to be something other than SIDS. States that have both local and statewide review boards are more than twice as likely to discover that the child died of asphyxiation.

More than one in every six infant deaths were found to have been cases of smothering or accidental strangulation in states with aggressive child death review, compared to one death in 13 for states with little or no such review.

The Florida Medical Examiners Commission, for example, adopted new standards for infant death investigations in 1999, requiring an official investigation of the scene of death so that causes like smothering or mechanical strangulation from bedding can be found. The state standards order medical examiners not to diagnose SIDS if other causes are suspected.

Florida leads the nation in infant asphyxiations. The state reported during the five-year period ending in 2004 that 256 infants suffocated from improper bedding or constricting clothing or because infants slept with an adult and were smothered accidentally. That's three times the number of "threats to breathing" deaths reported by California during the same period.

"This absolutely is a good thing," said Stephen Nelson, chairman of the Florida commission. "In the past, people were lumping into a large category a whole host of things that may not truly be SIDS."

Only about half of the nation has both local and state review of coroners' investigations into infant death.

The Scripps study also found that state health departments frequently do a poor job enforcing state standards among different coroners.

Dr. Ronald O'Halloran: One of the biggest discrepancies in how SIDS cases are diagnosed is in the greater Los Angeles area. More than three-quarters of all infant deaths in L.A. are labeled vaguely as "ill-defined or unknown causes." One of the worst discrepancies is in the greater Los Angeles area. In suburban Ventura County, for example, only about a quarter of infant deaths are diagnosed vaguely as "other ill-defined and unknown causes of death." Nearly three-quarters are labeled as SIDS.

"I still see a usefulness in making a diagnosis of SIDS, although I'm not surprised to hear that others are not," said the county's chief medical examiner, Ronald O'Halloran.

The trend is exactly opposite a few miles to the south in urban Los Angeles County. There, more than three-quarters of all sudden infant deaths are diagnosed as "ill-defined and unknown."

"Our people have started to look at cases of sudden infant death with a more in-depth investigation. We commonly find that the baby is sleeping in bed with an adult. Sometimes the adult is even intoxicated," said Christopher Rogers, Los Angeles' chief of forensic medicine.

"So we've been calling more of them to be 'undetermined' and fewer of them to be 'SIDS.' We often can't tell the difference between the two," Rogers said.

Emily Page got caught up in California's tangle of infant death investigation standards when she and her husband, Kevin, lost their 5-day-old daughter, Gwenyth, in December 2005.

"It wasn't really a co-sleeping situation. I was sitting up in a chair holding her, but I had dozed off for a couple of minutes. We got her to the hospital very quickly, but there was nothing they could do to revive her.

"Our local medical examiner here in Jackson County wasn't comfortable doing the investigation, so she had Gwen's body sent to Sacramento County, about 40 miles away, where they have a lot more infant death cases than we do."

Although officials there told the Pages it appeared that their daughter had died of SIDS, "when the report finally came back it said it was 'an unexpected death of a neonate while co-sleeping.'

"That shocked the local ME and county health director and everyone who knew the situation. So the health department director did some more research and wrote to the Sacramento ME explaining more about it. So they finally amended it to an undetermined cause.

"I've since learned from other parents who lost babies that Sacramento is one of the places in the state where they're just not calling them SIDS anymore. I've also talked to three moms in other states who lost babies at the same age, in similar circumstances, and they were all called SIDS. So it's pretty evident to me that there's a lot of inconsistency and bias about this," Page said.

Authorities at the California Department of Health Services declined to be interviewed for this story. The office issued a written statement after reviewing results of the Scripps Howard study.

"California does not have a state-based medical examiner or coroner system. Each county is responsible for establishing the structure for investigating and determining the cause and manner of deaths," the statement said.

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