Confusion over SIDS, SUDI and an undetermined cause of death in infants

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Death is never an easy conversation, especially when it involves children.

But one Dr. Dirk Huyer does regularly as Ontario’s Chief Coroner.

He estimates about 40 per cent of those are him explaining a complicated answer to grieving parents: the child’s cause of death is undetermined.

“When we come up with undetermined, as loaded as that word might be to some, it really represents the truth,” Huyer said. “If we don’t know, we don’t know and we shouldn’t try and pretend.”

In November, a jury in Cape Dorset, Nunavut came to that conclusion after a week of testimony in Makibi Timilak’s coroner’s inquest.

The three-month-old boy died in April 2012. His cause of death was initially ruled sudden infant death syndrome (SIDS), then changed to a common lung infection, before changing back to SIDS.

Dr. Dirk Huyer Ontario's Chief Coroner

‘If we don’t know, we don’t know and we shouldn’t try and pretend,’ says Dr. Dirk Huyer, Ontario’s Chief Coroner about using the term “undetermined” as a cause of death. (CBC)

SIDS is an unidentifiable series of natural diseases that may lead to the sudden death of an infant.

SIDS cases rare in Ontario

After an autopsy rules out any other cause and an investigation into the circumstances surrounding an infant death fails to come up with any potential risk factors, such as an unsafe sleeping area or social risk factors then, a death can be classified as a SIDS.

That’s how Ontario defines SIDS, Huyer explained. It’s becoming rarer to see a SIDS death in the province. In the past few years there’s been either none or just a single SIDS case because he says the province uses a strict definition.

The definition is applied differently amongst physicians across the country, and in some cases, not used at all.
In the Timilak inquest, the pathologist who performed the autopsy testified he still believes the baby’s cause of death was SIDS.

But two other pathologists who reviewed his findings said they would classify Timilak’s cause of death undetermined, and the jury agreed.

“I try and help families to understand, the reason we give that word is because we don’t know. And what I encourage [families] to say is that my baby died suddenly, and we don’t know why. And that’s the truth,” Huyer said.

Two classifications in Nunavut

Nunavut uses two separate classifications in infant death: SIDS and SUDI, or Sudden Unexplained Death in Infants.

Dr. Huyer says SUDI is a confusing term because there are questions over when the definition is applied.

“How do you apply that? After the investigation is done? Or at the start of the investigation? The reality is that’s very confusing terminology so we use undetermined or we use SIDS [in Ontario] unless we find a cause of death.”

Helping to prevent SIDS

Last week the Qikiqtani Medical Association, a group of physicians who live and work in Nunavut and describe themselves as an advocate for patients and a resource for people in the territory released an explainer about SIDS, and how to help prevent it.

Qikiqtani Medical Association report on SIDS (PDF)
Qikiqtani Medical Association report on SIDS (Text)

On mobile? Read the report here.

“It’s our responsibility as medical providers to help parents have the resources, have the knowledge to keep their children safe,” said Dr. Amber Miners, a pediatrician who’s been living in Nunavut for the past seven years and is a mother of four children.

Amber Mossey and baby Joe

Dr. Amber Miners and her 2 month-old son, Joe. Miners and the Qikiqtani Medical Association are hoping to clear up some misconceptions around SIDS. (Submitted by Amber Mossey)

The vice president of the medical association says most people in the territory and across the world have been touched by SIDS in some way, and there are a lot of misconceptions out there about what it means.

“There’s no way of predicting which child it may affect, but there are things that you can do to help the overall health of the child and there are some risk factors you can prevent,” Miners said.

She stresses safe sleeping practices to parents: placing a child on their backs to sleep on a firm surface, sleep in the same room as your infant but not in the same bed and avoid giving infants pillows or soft cushions, which could impact their ability to breath.

“The goal really is to keep our children safe and alive,” she said.

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Confusion over SIDS, SUDI and an undetermined cause of death in infants

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