Sudden Infant Death Syndrome (SIDS) is the name that has been commonly used to classify the unexplained death of an apparently healthy infant under one year of age.
Canadian coroners have now stopped using the term SIDS, however, sparking a debate among parents and within the medical community.
Sarah Cormier, whose four-month-old daughter Quinn died while sleeping in her bassinet in December 2014, says she was told initially that the cause of her daughter’s death was SIDS.
Nearly a year later, however, Cormier received the official autopsy report stating cause of death was “undetermined.”
“It was so devastating to us to see that,” Cormier said in an interview on CTV’s Your Morning. “How do you explain undetermined to people? Where do you fit? How do you find support? It was very difficult for us.”
As a bereaved parent, she said was angry that she and her husband “didn’t fit into a category, that potentially, we didn’t have support.”
Ontario Chief Coroner Dr. Dirk Huyer said that the term SIDS is still used in the province, but “we provide very strict analysis of the definition.”
In the past, the terms SIDS has been used when no other medical condition can be found to determine death. In the absence of a diagnosis, medical researchers now want to pinpoint the exact cause in cases of unexplained infant death.
Huyer told CTV’s Your Morning that coroners want to provide the “best answer,” and if they don’t know, “we want to tell people that.”
He added: “We don’t know what the underlying cause of death in a SIDS situation, but we believe it’s a disease and there’s lots of research looking into see what disease that might be: It might be a cardiac problem, it might be a brain problem that causes the baby to suddenly stop breathing.”
Huyer said the communication factor with the bereaved family is important, and “explaining things in a careful and honest and open way.”
“SIDS is one of those potential things that could be under the category of undetermined,” he said. “So what we’re doing is, when we have questions and we’re unsure of the answer, we want to say the truth and the truth then requires us to look further to try to figure out why children die and we need to ensure that research and study and analysis occurs.”
Cormier, who is a member of the SIDS Calgary Society said she believes the term SIDS “needs to be used so that parents feel a connection” to the loss.
Huyer said that the medical community in Canada reviews its processes on a year-by-year basis and continues to study unexpected infant deaths. One area of research that could hold promise, he said, is genetic testing.
“We now know that there are a number of genes associated with disease abnormalities and we’ve now instituted genetic testing to look for potential cardiac abnormality-associated genes, because we believe that categories of SIDS type of deaths … may well be cardiac in origin.”
He added: “So in those cases, while they may have been previously characterized as undetermined or SIDS, they’d be characterized as a sudden cardiac death. So it would take it out of both categories because we would find a diagnosis.”
