FEW SIDS REPORTS CONCERN DOCTORS
Remember SIDS? Not so long ago, sudden infant death syndrome was a health topic on everyone’s lips, a feared and mysterious force that could deliver family tragedy in a heartbeat.
But not only has the phenomenon receded from public discourse, medical examiners in North America have increasingly moved away from citing the syndrome when babies die under hazy circumstances.
Ontario has reported no SIDS deaths the last two years.
The syndrome’s growing obscurity is a problem, turning back the clock to a time when parents felt tremendous guilt over their infants’ abrupt demise, and discouraging research into the still-unclear root causes, charges a University of Toronto pathology professor in a pointed new commentary.
“All these parents, they are given a diagnosis of ‘ undetermined,’ which doesn’t mean anything. They are left under suspicion,” Dr. Ernest Cutz said in an interview. “The focus has been lost, because what kind of research can you do on ‘undetermined?’ ”
Other pediatricians who study the field and affected parents say they share his concerns.
Karine Hebert, chair of Baby’s Breath, a Canadian advocacy group, says she had to seek out second opinions from independent pathologists to have her baby’s 2010 death classified as sudden-infant death syndrome.
“They have made SIDS non-existent,” complained the Lancaster, Ont., resident.
But coroners suggest the SIDS term is too all-encompassing and ill-defined for what is supposed to be a single disease, and emphasize the importance of singling out recognized safety issues — like a baby’s sleeping position — and being truthful when it’s unclear exactly how a child died.
“I do understand how some people may feel they may have contributed to that (death). I can’t say ‘No’ to them, because I don’t know the actual answer,” says Dr. Dirk Huyer, Ontario’s chief coroner. “We need to be completely transparent with families about what we know.
And some of that information we provide will be distressing.”
Sudden infant death syndrome came to the fore in the 1960s, a response to unexplained deaths of seemingly healthy babies that were dismissed as mysteries — or the parents’ fault, says Dr. Abraham Bergman, a Seattle pediatrics professor who helped draw awareness to the issue decades ago.
“I have literally 200 letters from parents who have had that explanation, saying how it’s ruined their lives, thinking basically ‘I killed my kid,’ ” he says.
Categorizing such deaths under the SIDS heading helped focus research efforts, comforted parents that their baby died from natural causes, and absolved them of blame, says Cutz’s article in the journal JAMA Pediatrics.
That research led to some key discoveries, primarily that putting babies to sleep on their stomachs — as well as smoking around them and sharing a bed with the infants — increased the risk of sudden death.
Everyone agrees that educating parents to make their babies’ “sleep environment” safer has sharply reduced the number of SIDS deaths.
Cutz and Bergman are convinced that as-yet-unknown biological or genetic problems make certain babies more vulnerable to risk factors like sleeping face-down — meaning the actual cause is a disease of some sort.
If the blame lay solely with, for instance, sleep position, there would be tens of thousands of babies who sleep on their stomachs dying every year in Canada, says Cutz.
But Huyer, the Ontario chief coroner, said there is often no proof an underlying illness was involved, and his agency is simply trying to paint a more precise picture of what’s behind the cases.
He believes, for instance, that sleeping position may actually be a direct contributing factor in the deaths, not necessarily a risk factor that makes a natural disease lethal.
Ontario’s chief coroner’s office still uses SIDS as a cause of death, but only if all other possible factors, such as unsafe sleep environments, have been eliminated. None have qualified in recent years, though the office reported an average of 55 “undetermined” infant deaths a year from 2005 to 2009, 57 in 2012 and 38 in 2013.
Categorizing all such deaths as caused by SIDS tended “to create confusion rather than clarity,” since the term really meant that no cause could be found, says the B.C. Coroner’s Service in a 2014 report.
The service says it follows a 2012 resolution by the Canadian Chief Coroners and Medical Examiners group that favoured the classification “undetermined” — rather than SIDS — for sudden baby deaths where the autopsy identifies no cause. The province recorded 114 of them between 2008 and 2012.
Cutz argues that the shift away from recognizing SIDS only delays finding the true root causes of the devastating deaths — information that could lead to better prevention.