[See: Diagnosis  Cot death, crib-death, SIDS]

Saving babies: Unexplained success in New York

State has lowest incidence of reported cases of SIDS, a fact some say is hard to believe

By THOMAS HARGROVE, Scripps Howard News Service

Saturday, October 6, 2007

At least on paper, New York state stands alone as having wiped out Sudden Infant Death Syndrome.

But medical experts and even some of the state’s own staff say the startling decline in New York’s SIDS deaths is the result of questionable accounting and even purposely changing the findings of local coroners.

A few months ago, the New York State Department of Health issued its vital statistics report for 2004 indicating only 23 children died of SIDS that year, the lowest number on record. If accurate, the records suggest New York has the nation’s lowest incidence of SIDS, less than a sixth of the national average.

“That has to be wrong!” said Henry Krous, director of the San Diego Sudden Infant Death Syndrome Research Project and a leading expert on SIDS.

“That figure indicates there has been a lot of diagnostic shifting, and cases that would have been called Sudden Infant Death Syndrome are now called ‘undetermined’ or something like that. The reduction in SIDS cases is due more to reclassification than it is to a real reduction in the numbers. There is no doubt about that. (New York’s count) is really quite remarkable.”

Parents of children who died of SIDS are also skeptical.

“Twenty-three? I find that very hard to believe. In fact, I can’t believe it,” said Meta Dupuis, 30, of Glens Falls, N.Y. The death of her son, Michael Patrick Dupuis, was ruled a SIDS death in 1997, a time when SIDS diagnoses were more common in New York.

“In my opinion, coroners should not be able to mark a death certificate as ‘unexplained.’ If they can’t explain it, then it should be called SIDS.” Dupuis said.

Neither the New York state health commissioner, Richard Daines, nor Jim Raucci, director of the state’s Childhood Morbidity and Mortality Unit, would agree to be interviewed for this story.

In 1992, New York reported 241 SIDS deaths to the Centers for Disease Control and Prevention (CDC). If the 2004 statistic were accurate, New York has about one SIDS death per million population, compared to the national average of more than seven deaths per million.

Scripps Howard News Service studied the sudden and unexpected deaths of 20,459 infants reported to the CDC from Jan. 1, 2000, through Dec. 31, 2004. The study found that New York has the nation’s lowest incidence of reported cases of SIDS and the highest incidence of children reported to have died of “other ill-defined and unspecified causes of mortality.” Of the 869 sudden infant deaths in New York during the five-year period studied, 645 were categorized as dying of unspecified causes, 178 were listed as victims of SIDS and 46 died of “accidental and unspecified threats to breathing.” This last category means that children suffocated because of bedding or were accidentally smothered while sleeping with others.

According to CDC records, New York leads the nation in reporting that infants have died of unknown causes.

However, local coroners and medical examiners said they have been making more SIDS diagnoses than are found in the CDC data.

Scripps Howard contacted all 62 county health departments in New York, asking that they check their records to determine how many SIDS cases they reported in 2004. Most counties rely upon the State Health Department’s computer system for the management of their records and could not provide independent data. But 26 counties were able to independently review their records and reported 41 SIDS deaths that year, nearly double the official statewide tally.

The Erie County Medical Examiner’s office reported to the state health department that seven infants died of SIDS in the greater Buffalo, N.Y., area. But none were found in the CDC data. All of the county’s sudden infant death cases had been recoded from the original “R95” coding for SIDS to an “R99” code, which means the cause of death was undetermined.

“Jeez, I’m not sure what is going on here,” said Erie County Chief Medical Examiner James Woytash. “We try not to use the ‘undetermined’ classification. I can’t say we’ve never used it. But neither myself nor the other two doctors here use it much. I can’t see how these records got misfiled. This is troubling.”

A spokesman for the New York State Department of Health conceded the state sometimes rewrites the SIDS diagnoses.

“If the death certificate states SIDS and no other condition is stated, the cause of death is coded R95,” said spokesman Jeffrey W. Hammond. “A cause of death that ultimately is determined to be SIDS may be coded as R99 if the death certificate states (a) ‘pending investigation.’ ”

The Scripps Howard study found 37 percent of all sudden infant deaths from New York were listed as “pending cases,” the highest percentage for any state. Most medical examiners and coroners list a case as “pending” when the autopsy and other medical tests have not yet been completed.

Woytash said he doesn’t understand why this happened.

“We, obviously, sign these right at the beginning as a pending investigation on all of these cases. Then, after histology, the toxicology, the metabolic screening and the investigation, then we will sign these out as SIDS, near SIDS or consistent with SIDS,” Woytash said.

Hammond declined to answer why so many cases are reported to the CDC as pending. He also declined to answer how often the state health department recodes SIDS cases or why it would want to do so.

Some coroners in the state report the New York State Department of Health during the 1990s urged them to more carefully investigate SIDS cases following several extremely embarrassing misdiagnoses involving multiple murders of infants within families.

“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.” New York health officials urged tougher SIDS investigations in the aftermath of three nationally prominent scandals in which coroners and medical examiners failed to detect multiple murders.

One of the worst was the case of Waneta Hoyt, of Newark Valley, N.Y., who methodically killed her five children from 1965 to 1971. The local coroners attributed each to a series of unrelated sicknesses. But Syracuse-based pediatric researcher Alfred Steinschneider, who was called to consult after the first three deaths, concluded the cause was genetically linked, apnea-induced SIDS. He said the Hoyt family was proof that SIDS can run in families.

Dallas-based pathologist Linda Norton was skeptical after reading Steinschneider’s research and convinced a district attorney to reopen the case. After state troopers confronted the mother in 1994, Hoyt confessed to smothering each of her children with pillows to silence their crying.

Many SIDS experts said they believe coroners, medical examiners, even state health departments have become shy about making a SIDS diagnosis out of fear they will miss a homicide and face the public embarrassment that several New York medical authorities endured.

“No coroner wants to call it SIDS anymore because of all the talk about suffocation, bed sharing and child abuse,” said John Kattwinkel, chairman of the Centers for Disease Control and Prevention’s special task force on SIDS. “They tend to call it sudden unexpected infant death, since there is a code for that as well. But it doesn’t fit the SIDS definition.

“Now it’s getting a little muddy. In fact, it’s getting many of us concerned that the rate of SIDS really isn’t decreasing significantly, that a lot of it is code shifting. The main harm is that we are not getting accurate data. We are getting different data. We don’t know where the best place is to put our emphasis on further reducing the risk of SIDS,” Kattwinkel said.