Some provinces, territories not tracking race of infants who die in their sleep

Safe Sleep is an investigative series examining what risk factors were present in more than 1,300 incidents of infant death over an 11-year span in Canada.

Data from three provinces shows Indigenous infants are dying during sleep at rates that aredisproportionately higher than their share ofthe population, but several other jurisdictions in Canada aren't tracking that information.

A CBC News investigation found that at least 1,338 infants died with unsafe sleep risk factors present, such as soft sleep surfaces or bed sharing, after reviewing reports from coroners and medical examiners across the country from 2009 to 2019.

It's not always clear what role unsafe sleep risk factors played in aninfant's death, but some researchers say more needs to be done to make safe sleep a priority.

It's nearly impossible to say exactly how many of those more than 1,300 infants were Indigenous, because there is no national standard for tracking racial identity in infant mortality.

• Unsafe sleep practices present in hundreds of infant deaths in Canada, CBC investigation finds

But experts say the datais important in order to address the need for better healthcare forIndigenous people, along with other factors such as poverty and overcrowding.

CBCNews surveyed each province and territory and found that five provinces do not track race, while at least one other province tracks it only when that detail is provided by the family. That information is tracked by Ontario, Manitoba and Quebec.

Misclassification and inequities

In Ontario, the vital statistics office could not even provide statistics on the number of newborn babies who are Indigenous, as the Office of the Registrar General which is responsible for registering births "does not collect ethnicity or Indigeneity on birth registrations for the parents of a newborn or a newborn."

Dr. Janet Smylie says the lack of a consistent national birth registration leads to underrepresentation and misclassification.

"The systems are not well set up to correctly identify First Nations, Inuit and Mtis infants when they're born or track their birth outcomes," she said.

Smylie is a Mtis-Cree family doctor who teaches at the University of Toronto's Dalla Lana School of Public Health and Department of Family and Community Medicine. She's spent years researching such issues asIndigenous infant mortality.

Among her findings: First Nations and Inuit infants die two to fourtimes more often than non-Indigenous infants.

Smyliesaidthe inequities and disparities in health care that Indigenous people face are rooted in colonization and they persist because of racism.

"Misclassification will always mean that you're masking the inequities," she said. "So it'll look like ... the rate of infant mortality for Indigenous people will be falsely lowered."

Smylie also said racism within health-care institutions means that some women won't identify as Indigenous to stay hidden.

"It's very common that people get substandard and second-rate treatment or treated in a very abusive manner," she said.

Statistics don't provide the full picture

In October 2021, CBCNews received data from the Office of the Chief Coroner of Ontario showing that 55 per cent of "sleep-related deaths"from 2009 to the beginning of 2021 were Indigenous infants.

But in January, the office sent a revised number of 12 per cent, citing a previous data collection error. While it's lower than the 55 per cent number provided last year, it's still an overrepresentation, as Indigenous children make up only four per cent of the population up to the age of four in Ontario, according to Statistics Canada.

It also may not be the full picture.

Dr. Dirk Huyer, Ontario's chief coroner, said the 12 per cent figure could be an undercount because prior to August 2021, his office wasn't systematically collecting race and ethnicity data.

"Without doing that in all deaths, it means that the process would not be capturing everybody unless there was clear evidence of somebody being First Nations, which would be living in a First Nations community or families specifically providing that information," he said.

Huyer said the coroner's office has been moving toward collecting more data that relates to a population's health.

"Not only are we collecting race and identity data, we're trying to work on collecting educational background, where people live, what their income may be, their status of employment, those sorts of things that are all contributing to people's determinants of health," he said.

Ontario's former child and youth advocate, Irwin Elman, saidprovinces and territories need to collect that data to better understand what's lacking in the ability to support infants' families.

Data on Indigenous infants needs to be collected "not because we think there's a problem with the parents, the Indigenous parents, but we think there's a problem with the circumstances that they find themselves in and the circumstances that, frankly... we placed them in," he said.

"Is there any group of people in Ontario or anywhere in Canada who are not more affected by the root causes of social determinants of health?By enduring racism. By enduring the legacy of the residential schools. By not having clean drinking water. By not having proper housing," Elman said.

"And we wonder how that might affect the ability of parents to care for their children? We should be angry. These are children who die."

Better data, better policy: youth advocate

In Manitoba, the province's children and youth advocate found a stark overrepresentation: Despite representing only 20 to 30 per cent of live births, Indigenous infants made up 57 per cent of "sleep-related infant deaths."

That, too, is likely an undercount, a 2020 advocate's report says, because "reports reviewed did not routinely collect this information" and they couldn't determine ancestry for 32 per cent of the infants in their study.

The advocate's office recommended that the province adopt a standardized reporting form to improve the data collected at the scene when an infant dies.

"The more data that we can track accurately around the different experiences that children and youth and infants are having, the better our policy and our law-making is going to be," Ainsley Krone, Manitoba's acting advocate for children and youth, said.

The report also found that 35 per cent of the Indigenous infants in thestudy did not have access to a safe sleep surface such as a crib, compared with14 per cent of non-Indigenous infants.

TheFirst Nations Health and Social Secretariat of Manitobaruns a voluntary program where staff make home visits to talk about issues such assafe sleep, with the goal of helping children reach the age of two and beyond.

"We really try to be culturally relevant and promote the practices that people are familiar with in their communities," said Joyce Wilson, a peer resource specialist with the secretariat's maternal child health program, which serves 33 of 63 Indigenous communities in theprovince.

"With the idea of swings or tikinagans [cradleboards], we definitely want them to check with knowledge keepers, with elders, to make sure that they're using these correctly so that children are safe when they're using them."

Wilson said while she would eventually like to see the program serve all Indigenous communities in the province, more funding would be required.

"We can send materials there, we did send our safe sleep resource," shesaid. "But if there's no program to actively utilize it, it doesn't reach the families."

'Alarming disparities persist'

Last year, Health Canada updated its guidelines around safe sleep, detailing best practices on how to keep infants safe while sleeping.

"Alarming disparities persist among Canada's Indigenous population, with a SIDS [sudden infant death syndrome] rate more than seven times higher than the non-Indigenous population," says a joint statement issued by the Public Health Agency of Canada, the Canadian Paediatric Society, Health Canada and Baby's Breath Canada.

Health Canada says the safest place for an infant to sleep is in a crib, cradle or bassinet, and it noted that soft surfaces such asbeds and sofas increase the risk of suffocation and other hazards.

Cradleboards, or tikinagans, which are "handmade, framed, flat baskets where the baby is placed on his or her back," are also safe, according to the First Nations Health Authority in British Columbia, as long as the baby isn't swaddled or fastened too tightly and the cradleboard is placed flat on the floor, away from hazards.

Another factor that increases risk is bed sharing, Health Canada says.Since overcrowding and lack of access to affordable housing is a pervasive issue within First Nations and Inuit communities, bed sharing might be more present.

"If we can't have adequate housing, then we're not going to be able to keep our infants safe," Smylieof the University of Toronto said.

According to the 2016 census, one-fifth of Indigenous people in Canada live in households considered to be overcrowded. This rate is highest among Inuit at 40.6 per cent, while the rate for First Nations is almost 23.1 per cent and for Mtisit's 8.7 per cent.

Overcrowding and lack of affordable housing for First Nations and Inuit communities are considered social determinants of health. Factors such asincome, education and employment, as well as experiences of discrimination, racism and historical trauma, have a large influence on an individual'splace in society, according to Health Canada.

Elman, Ontario'sformer youth advocate, also said that social determinants of health, includingpoverty and poor parent health, are factors in sleep-related infant deaths.

"Are we going to do something about that? No, let's do some guidance about telling parents not to sleep with their children, because that's an institutional solution to a human problem," he said.

"Social determinants of health, trying to tackle the real root causes in terms of poverty, that's a much more difficult thing for the government to do."