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Saving babies: Exposing sudden infant death in America

Study: We are further away from solving SIDS mystery

Karen Pulfer Focht / The Commercial Appeal
Penny Callonas, of Memphis, finds her healing in writing "letters to Trace," the baby she lost to SIDS after only a few months of life.

By Thomas Hargrove
and Le Bowman,

Published: Friday, October 12, 2007 at 3:30 a.m.
Last Modified: Thursday, October 11, 2007 at 11:45 p.m.

Every day in America at least 10 babies die suddenly andmysteriously.

What SIDS is
The Center for Disease Control and Prevention defines SIDS as: “The sudden death of an infant less than 1 year of age that remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history.”
SIDS is frequently described as a diagnosis of exclusion. If no other cause of death can be determined for an infant, medical authorities are advised by the CDC to issue a diagnosis of SIDS.
The syndrome is still a mystery, although it follows many important patterns. It almost always strikes when infants are thought to be sleeping. Sleeping on the stomach rather than on the back raises a baby’s risk for SIDS by as much as 12-fold. SIDS occurs in boys more frequently than girls and is most common in the first and second months of life.
Most experts now believe that babies who die from the syndrome are born with one or more physical conditions affecting their respiratory or metabolic functions that make them more vulnerable to conditions such as prone sleeping or parents who smoke.
What SIDS is not
The determination that a baby died of SIDS means that a coroner or medical examiner could find no other cause of death after an autopsy, examination of the death scene and a review of the medical history of the baby and its mother.
Experts don’t know what causes SIDS. But they agree SIDS is not:
  • The result of homicide or accidental suffocation or
    strangulation.
  • The result of neglected illness, accidents or abuse, or the Munchausen by Proxy syndrome, in which parents harm their children so the parents get attention from doctors.
  • Preventable. There are things parents can do to reduce the RISK of their baby dying from SIDS, like place him or her in a back sleeping position, breastfeed and not smoke. But some babies still die from the syndrome when all precautions have been taken.
  • Treatable. While there are occasional reports of ‘near-SIDS’ events, these are in fact some other type of life-threatening event generally affecting low-birth-weight or premature infants.
  • Apnea (cessation of breathing). People of all ages do stop breathing for various medical reasons, but in SIDS, not breathing is a result, not the cause of death. Infants with apnea can be resuscitated; babies who die from SIDS cannot be.
  • The result of infant botulism, which often strikes babies around the same age.
  • Caused by immunization. Although SIDS may coincide with some baby shots, there is no proven link and babies who have not been immunized have also died from the syndrome.
  • Caused by colds or stomach viruses. While many parents report their infant had recently had a bout with such illnesses, researchers say this timing is also coincidental and not any direct cause of SIDS. The syndrome is not contagious.
  • Hereditary. Repeat cases of SIDS in a family are very, very rare. Although it’s possible that some genetic traits that put infants at greater risk could be passed along, there’s no significant evidence that they are.
    Source: Scripps Howard News Service

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    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," Covington said. "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 CDC. 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 scrippsnews.com/sids.

    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 reviewed by Scripps showed that cases of SIDS virtually disappeared in some states and cities during 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" and "sudden and unexplained death."

    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

    "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 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 CDC 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 on 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 do not 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.' "

    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.

    "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

    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."


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