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Does SIDS Exist? Canadian Coroners Aren’t So Sure

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‘SIDS’. Few things send waves of panic through new parents like this four-letter word. It’s a word that triggers a visceral reaction, a sense of dread, and a feeling of helplessness. We put our babies to bed on their backs on a firm mattress with no bedding but a tightly fitted sheet, we check the temperature of the room, we take care to neither over or under dress them. We kiss them goodnight, knowing that even having done everything ‘right’, there is a chance they could not wake up. Knowing that occurrences of SIDS are rare is of little comfort to parents obsessively checking to make sure their babies are still breathing.

But what if SIDS (sudden infant death syndrome) didn’t actually exist? According to a recent Globe and Mail article, the term SIDS has been steadily falling out of use, with the Canadian Forum of Chief Coroners and Chief Medical Examiners  reaching a decision in 2012 to use the term ‘undetermined’ instead of SIDS in cases where there was no clear cause of infant death. While each province applies this determination slightly differently, and some coroners use the terms ‘sudden unexplained death’ or ‘sudden unexpected death’, SIDS as a cause of death has been largely phased out.

If this comes as a surprise to you, you’re in good company. It seems that this shift has gone largely unnoticed by the general population. But it has not been ignored by bereaved parents, shocked to discover that instead of a diagnosis, they’re left with a cold ‘undetermined’ as the reason they lost their babies.

The reason for the switch to ‘undetermined’—from a medical point of view—is one of clarity. SIDS had become too all-encompassing, covering both unexplained deaths and even some that were likely accidental. It gave the impression that SIDS was a defined condition, when in fact it is determined by lack of conditions found. By switching to ‘undetermined,’ medical examiners sought to more accurately label cause of death. In fact, the Canadian Paediatric Society does not offer an official definition of SIDS.

The word, however, carries a lot of weight. Parents have largely accepted that though measures can be taken to lessen the likelihood of SIDS, it still happens without warning and is largely unpreventable. Losing a child for any reason is a horror no one should have to endure, but at least with SIDS there is some comfort in the knowledge that it was out of a parent’s hands. The word ‘undetermined’ carries no such solace. To a medical examiner, it may be clearer, but to a bereaved parent it opens up questions of missed chances of prevention and the guilt that comes with it. Was there something they could have done? The answer is almost certainly no, but they cannot be faulted for wondering. SIDS, despite its lack of a finite definition, at least brought some closure. We don’t know what SIDS is, but parents could rest a little easier knowing their child had a cause of death.

Parents aren’t the only ones uncomfortable with the new terminology. Some experts in the field are concerned that the lack of acknowledgement of SIDS could hinder research. Ernest Cutz, a retired pathologist from Toronto’s Hospital for Sick Children and leading SIDS expert, told the Globe and Mail that SIDS is more than just a matter of unexplained death or confusion with accidental suffocation. Researchers such as Cutz support the theory that babies who die of SIDS have underlying abnormalities that put them at greater risk of sudden death. Factors such as stomach-sleeping or a warm room simply foster environments that make the condition more likely to manifest. Labelling a death as undetermined softens the links between children who have died without definite cause, and discourages the notion that while SIDS may be diagnosed through exclusion at the moment, it is, as Cutz puts it, ‘a rare paediatric disease that needs to be addressed.’

The decision to change terminology may seem like mere semantics, but the consequences are further reaching. One thing everyone can agree on is that too many babies are dying unexpectedly. Whether classified as SIDS or as ‘unexplained,’ the questions need to be answered. If we can’t prevent parents from losing their babies, we at least owe them an explanation of why.

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