Saving babies: Exposing sudden infant death in America
By THOMAS HARGROVE and LEE BOWMAN
Scripps Howard News Service
Every day in America at least 10 babies die suddenly and mysteriously.
Yet some of the more than 4,000 victims of sudden infant death each year could be saved if there was a simple national standard for infant death investigations, a seven-month review by Scripps Howard News Service has found.
In fact, we are getting further away from solving the mystery of Sudden Infant Death Syndrome because of sloppy procedures, manipulation of statistics, misguided efforts to protect the feelings of grieving parents, and deliberate attempts to make SIDS go away, at least on paper.
The Scripps review of 40,000 infant deaths going back to 1992 revealed that the quality of infant death investigations, the level of training for coroners, and the amount of oversight and review vary enormously across the country. In many cases, professional bias -- both for and against a diagnosis of SIDS -- trumps medical evidence.
As a result, the odds that an infant's death will be correctly diagnosed are often determined by geography rather than science. In other words, the same death might be called SIDS in one county and called something else just down the road.
"There's no rhyme or reason to what medical examiners are diagnosing as SIDS, suffocation, strangulation or undetermined," said Theresa Covington, director of the National Center for Child Death Review Policy and Practice at the University of Michigan. "The variability is across the country and within the states."
The confusion comes with a very high price: the deaths of more babies who might have been saved through medical research.
The deeply muddled approach even has many experts questioning if a much-celebrated decline of SIDS deaths since the early 1990s was actually as significant as first believed.
"If we had a standard approach to investigating and classifying these deaths, our approach to prevention and research could be a lot clearer," said Dr. James Kemp, a leading SIDS researcher at St. Louis University. "The whole reason for keeping count is to figure out how to avoid the next infant death."
Yet questionable statistics from this haphazard system continue to guide public policy and outreach campaigns, as well as government research efforts that have devoted more than $110 million to SIDS research in the past five years from the National Institutes of Health alone, plus millions more from foundations seeking to understand why babies continue to die.
"You have to worry about the quality of this data (from death certificates), but there are researchers still using them," said Covington. "I simply don't put any credibility on any research that uses those numbers anymore."
According to standards set by the World Health Organization and the Centers for Disease Control and Prevention, SIDS should be diagnosed when an infant less than 1 year of age dies suddenly and unexpectedly and no clear cause of death is found after a thorough investigation that includes an autopsy, examination of the death scene and review of the child's clinical history.
Scripps conducted an extensive study into how infant deaths are investigated in the United States using records provided by the Centers for Disease Control and Prevention. The records detail the sudden deaths of 40,239 infants, half of whom died in the 1990s and the rest in a five-year period from 2000 to 2004.
The records of the most recent infant deaths, from 2000 to 2004, can be examined in the first searchable database of its kind at www.scrippsnews.com/sids/database.
The review found enormous variation in how the deaths of infants are investigated and classified. The SIDS rate, according to the data, is 12 times higher in Mississippi than in New York. Most experts agree that the big differences are caused by how the deaths are classified, not by how the babies died.
Variations are sometimes even greater from county to county within a state because coroners take widely different approaches to how they determine the cause of infant deaths in their areas.
Federal records show a dramatic decline in reported cases of SIDS, dropping from 4,895 cases in 1992 to only 2,247 in 2004, the most recent year for which complete data is available.
The records examined by Scripps showed that cases of SIDS virtually disappeared in some states and cities over the last several years, but closer examination of the data makes it evident that thousands of those lives have not been "saved," but rather lost under another name.
Coroners and medical examiners said SIDS was responsible for nearly 80 percent of all sudden infant deaths 15 years ago and only 55 percent in 2004. What increased during this time were diagnoses that CDC statisticians labeled as "threats to breathing" and "other ill-defined causes of mortality."
Some researchers think that this "code shifting" of infant death causes has substantially overstated the success of public health efforts against SIDS. The diagnosis of SIDS has been replaced on death certificates by new and vague terms like "undetermined cause," "sudden and unexplained death" and "other ill-defined and unknown causes of mortality."
The result is that, while deaths attributed to SIDS are down, the overall number of sudden infant deaths has remained steady, and even ticked up in some years, since 2000.
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.
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.
"No one knows why my baby died"
Caught in the middle are thousands of grieving parents left without clear explanations for why their babies died.
"The autopsy report said 'undetermined causes.' It is a horrible, horrible thing to be told that no one knows why my baby died," said Angie Steffke, of Indianapolis. Her son, Owen, died mysteriously in 2003 at the age of 8 months.
"A police detective told me that the state of Indiana no longer uses the term 'SIDS.' The new name is 'undetermined causes,' " Steffke said. "That really upset me because they want to say that SIDS is happening less often. But there are no fewer babies dying. They are just calling it 'undetermined causes.' "
Melissa Clements was astonished when in 2001 she opened the death certificate for her 5-month-old daughter, Chassidy, and read the cause was "undetermined." The Guthrie, Okla., woman asked that the case be reopened and eventually learned the vague diagnosis resulted from miscommunication between the coroner and the pathologist over whether key medical tests had been made.
"We are being misled. It is important that these numbers be reported correctly," Clements said. "It was important to me. I wanted to know that the correct cause of death is listed on the death certificate."
How an infant death is coded -- whether SIDS or "undetermined" -- can be part of the parents' grieving process.
"Sudden Infant Death Syndrome is a very, very comforting diagnosis for a parent who is grieving," said San Diego's Krous. "It is a diagnosis that states that the caregiver was not responsible, either by some act of omission or commission, for the death of a baby. It makes for much healthier grieving."
But less certain diagnoses can make parents feel they might have done something wrong.
Suzette Gripp, of Eads, Tenn., has been calling for better SIDS investigations since the 1974 death of her daughter, Sheyenne. She became so frustrated by the system she even conducted her own research survey of more than 300 SIDS parents over a seven-year period. She's still sifting through those results.
"The problem to me lies with there not being a law in place for a national standard for death investigation of infants," Gripp said. "They (medical authorities) tout the numbers going down, but those numbers are so skewed because of the reporting system that no one really knows how many babies are dying from SIDS or from other causes.
"If we just had good information, I believe we could find out what's causing all these deaths. There needs to be a federal mandate, that it's punishable by law if local and state investigators don't follow whatever protocol has been set. It needs to be made a national priority."
The mystery of SIDS
It was SIDS parents like Gripp, along with a handful of medical researchers, who successfully lobbied federal health officials and Congress to make research and prevention of sudden infant deaths a major focus of the National Institute of Child Health and Human Development, starting with the Sudden Infant Death Syndrome Act of 1974.
Until after World War II, police and doctors generally assumed that "crib death" of infants was the result of either accidental suffocation or infantile pneumonia, provided there was no sign of child abuse.
By the 1970s, medical journals and professional associations were advising doctors that sudden infant death was, more often than not, the result of some mysterious disease or defect in the brain or respiratory system. The term and definition of SIDS were formally adopted at an international conference on sudden deaths in infants held in Seattle in 1969.
Decades of SIDS research has found many risk factors that make it more likely that a seemingly healthy infant will stop breathing, but it was studies from Europe, Australia and New Zealand during the 1970s and '80s that spotlighted one particular threat -- babies sleeping on their stomachs.
That in turn generated the U.S. government's "Back to Sleep" campaign encouraging new parents to position babies on their backs for sleeping. The outreach effort, begun in 1994, gets credit for cutting SIDS deaths by 30 percent to 50 percent by the end of the decade.
In 1992, 80 percent of more than 6,000 sudden unexplained infant deaths nationwide were labeled SIDS deaths; just four years later, as Health and Human Services Secretary Donna Shalala announced a 30 percent decline in SIDS deaths since 1992, only 69 percent of such deaths were being called SIDS.
Shalala said in 1996 that 1,600 fewer deaths from SIDS was "a real cause for celebration. This is a very rapid improvement and there's every reason to believe that the Back to Sleep campaign has made the difference."
But soon after that celebration, SIDS experts began seeing a worrisome plateau in sudden infant deaths, around a stubborn 4,000 a year. The difference was, fewer and fewer of those deaths were being classified as SIDS, so that by 2004, only about half of the infant deaths without obvious medical causes were being called SIDS.
The shift appears to have occurred for many reasons -- from deliberate decisions by health officials and medical examiners to avoid SIDS diagnoses to a failure among many investigators to go through the extensive process of elimination of other causes of death that leaves SIDS as the only explanation.
"The success of the Back to Sleep effort has been short-lived and in the past few years, the number of infant deaths has held steady," said St. Louis University's Kemp. "The diagnostic mess has been the subject of a lot of meetings and debate, but the lack of consistency continues and it leaves too many infants dying who don't have to be."
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."
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.
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.
The co-sleeping factor
Many parents report medical authorities routinely refuse a SIDS diagnosis if they'd been sleeping with their infants.
Kim Lankford, a civilian employee of the Baltimore County, Md., Police Department, lost her son, Hunter, at 5 months on April 3, 2006. She tells most everyone who asks that she lost her son to SIDS, even though the Maryland State Medical Examiner's report doesn't call it a SIDS death, but a sudden unexplained infant death.
"As I understand it, they can't call it SIDS because he was sleeping with us. But at the same time, there was nothing from the autopsy to indicate that he suffocated. The investigators told me early on there probably wasn't going to be a reason why he died."
Maryland officials consider relatively few deaths to occur from SIDS and note factors such as co-sleeping or unsafe sleeping environments in many instances.
"It's a fallacy that we have all these decreased deaths," said Donna Becker of Maryland's Center for Infant and Child Loss. "... We should really call it 'SID.' The syndrome is lost. We are really talking about sudden infant deaths with no known cause."
Susan Honaker of Sterling Heights, Mich., lost her 3-week-old son, Evan, in May 2005."He was totally healthy, two weeks early. He had been lying beside me. I woke up and found him gone at about 9 in the morning," she said.
"I called for six weeks straight trying to find out why he died, and they put me off that they were waiting for such and such to come back. Finally they put on the death certificate: 'Accidental suffocation due to hazardous sleeping environment.' "
"The coroner told me flat-out: 'If you'd found him in a crib, I would have called it SIDS, but since he was laying with you, I put this.' But there was no evidence from the autopsy or the bedding that he suffocated. I've done a lot of research since then, and they don't know," Honaker said.
Michigan authorities defend their methods, however.
"It is an evidence-based approach ... but we're very sensitive that new warnings about new risks can be very painful for parents who lost infants who thought they were doing everything right at the time," said Sandra Frank, director of Tomorrow's Child-Michigan SIDS, an unusual state-private organization with a dual mission of educating to prevent infant deaths while also supporting and counseling families who've lost babies.
Parents often battle with coroners increasingly reluctant to sign off on SIDS cases. Many have been successful.
Melissa Haberzettl, 29, of Colorado Springs, Colo., was convinced the coroner in her county had made a mistake in ruling that her 3-month-old son, Jake, died of viral pneumonia in February.
"My husband and I are both physical therapists, so we have many connections in the medical field who all agreed with us that this was a ridiculous diagnosis. He had no symptoms, no fever, no change in feeding or eating patterns, nothing," Haberzettl said.
"The coroner told us that Jake probably did not die of viral pneumonia. But there was a virus present in his system so that is what they were calling it, because SIDS is a diagnosis of exclusion. Even if they could not conclude that the virus caused death, it was not called SIDS by definition. Silly, right?" she said.
She urged county officials to reconsider, and they agreed to a consultation by Krous, the San Diego pathologist and SIDS expert. In June, Krous ruled the death was from SIDS, and Jake's death certificate will be amended.
"The most common reason I'm consulted is because a baby was clinically well, by all accounts. There are exceedingly few disorders in which a baby is well and then, the next minute, the baby is dead," Krous said. "If the baby was well, most of the time I will make the diagnosis of Sudden Infant Death Syndrome."
Haberzettl said she's grateful that Jake's case was clarified. But she's become irritated with the erratic standards for investigating the deaths of children.
"I find it rather frustrating," she said. "Things that used to be called SIDS are being called something entirely different. I don't know why. How can it be called one thing in one county and something completely different in another? It's crazy."
For more information and an interactive database, go to www.scrippsnews.com/sids
(Distributed by Scripps Howard News Service, http://www.scrippsnews.net)
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