‘Babies don’t just die’: Alberta parents say partial phase out of SIDS causing confusion and pain

Click to play video: 'Parents share concerns as term SIDS phased out in Alberta' Parents share concerns as term SIDS phased out in Alberta
WATCH ABOVE: Parents who lose a baby to a sudden and unexplained death are worried about a change in how those deaths are classified. The term Sudden Infant Death Syndrome (SIDS) is being phased out in many parts of Canada. Laurel Gregory has more from concerned parents – Sep 13, 2016

Long before Sarah and Lee Cormier found their baby Quinn’s lifeless body, Canadian medical examiners and coroners made a change that would make the loss even more unbearable.

In 2010, at an annual meeting, the profession determined provinces and territories should classify unexpected infant deaths in a more consistent way.

That led to some jurisdictions phasing out the term SIDS, or Sudden Infant Death Syndrome, in favour of the term undetermined, says Ontario Chief Coroner Dr. Dirk Huyer.

For the Cormiers, waiting 14 months to learn their daughter died for an unknown reason was “horrific.” Quinn was just four months old and appeared perfectly healthy when she died in her bassinet Dec. 28, 2014.

“The medical examiner’s office phoned and started the conversation by saying they were sorry it had taken so long, but the cause of death was undetermined,” Sarah recalls.
The grieving mother burst into tears.

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“What is that? What does undetermined mean? That means nothing to us. It’s not helpful. Where do we fit? Why can’t you find something? Babies don’t just die.”

Provinces and territories haven’t reached consensus on how to classify sudden and unexplained deaths of babies under one year. While medical examiners and coroners in B.C, Alberta and Saskatchewan use the term undetermined, Huyer says Ontario uses both SIDS and undetermined.

A report from the office of Ontario’s chief coroner says, “SIDS is only given as a cause of death when all other causes have been ruled out. If the investigation reveals any concerning finding, the cause of death will not be classified as SIDS. It is a finding of exclusion, which is why there was only one SIDS case in 2014.”

Huyer says undetermined cases go before a panel of 20 experts including a crown prosecutor, a child maltreatment pediatric specialist, and a Health Canada product safety specialist.

“When I leave that room I feel that we’ve got the best answers possible and I feel we’ve done everything that I can think of to give the answers to the family.”

Between January 2014 and March 2016, Alberta recorded 43 undetermined deaths of children under one year.

Advocates worry the label change will lead to less support for grieving parents. Last week, the chair of SIDS Calgary Society presented a video showing parents’ concerns at the ISPID International Conference on Stillbirth, SIDS and Baby Survival in Uruguay.

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Dr. Ian Mitchell, a SIDS researcher, is worried parents who lose children to undetermined causes won’t be able to access important grief networks.

“I think it makes it difficult for parents to access peer support,”Mitchell says. “There are SIDS societies throughout the world so there’s a commonality of the name in parent groups. … If the official death certificate doesn’t contain that name and that’s not indicated to the parents, it’s not clear where they get peer support which is an important part of support.”

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The Cormiers also fear research dollars will dry up.

“Who is going to fund research for undetermined?” Sarah asks.

Huyer says he hasn’t seen evidence of decreased research funding as a result of the shift. In fact, he believes a broader approach could lead to answers for why babies die suddenly and unexpectedly.

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“There’s discussion about genetic testing because there’s some information in the literature that supports the potential that cardiac abnormalities will lead to a SIDS-like death – so, an unexpected death in an infant without any finding. We’re now learning more about those and gene abnormalities that may be associated with those.”

In the absence of an answer, the Cormiers have put their energy into providing support for other bereaved parents. They established Quinn’s Legacy Society, which financially supports Alberta parents who have lost babies to SIDS when they lose maternity benefits.

The couple often still describes Quinn’s death as due to SIDS.

“You hold so close to your heart that maybe you did do something wrong,” Sarah says. “The questioning that happens in grief – let alone without a label – is difficult.”

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