Parents left grieving unexplained death of their toddler ask MPs to make April 26 SUDC Awareness Day

Wendy Fuentes and her husband, Philippe Panneton, woke up before dawn in their home in Greenfield Park, Que., to feed their seven-week-old daughter, Héloïse.

They glanced at their video baby monitor to check on their toddler, 21-month-old Manuel.

It was 4:30 a.m. on April 26, 2016. Little did they know those few seconds would be the last time they would see their son alive.

"He was moving and breathing in his sleep. Everything was fine. By the time I woke up again to go to work, to wake him up at 6:15 to give him his breakfast, we found him — I found him — cold and stiff," Panneton told CBC Daybreak's Mike Finnerty on the second anniversary of Manuel's death.

"He had passed shortly after we saw him on the monitor."

The coroner concluded their healthy, robust son had died mere minutes after his parents had last checked up on him.

"We went to a checkup a couple of days before. He was a completely strong, big boy. Everything was perfectly fine," said Fuentes.

Manuel's story is not unique. Deaths like his are categorized as "sudden unexplained death in childhood" (SUDC).

Most people have heard about SIDS, or "sudden infant death syndrome," but SUDC — the clinical term used to classify unexplained deaths in children older than a year — is lesser known.

Manuel's death remains unexplained. The coroner's investigation, conducted jointly with investigators at the Montreal Children's Hospital, took a year and a half.

"The coroner's report is really thorough," Panneton said. "We're confident that they've tried everything and left no stone unturned."

In Canada, information about the prevalence of SUDC and research into the syndrome are  scarce. Statistics are collected in the U.S., but Canada has yet to follow suit.

Fuentes and Panneton have received support from a privately funded organization based in the U.S., the Sudden Unexplained Death in Childhood Foundation. It is the only organization in the world whose purpose is to promote awareness, advocate for research and support those affected by SUDC.

Petition for SUDC Awareness Day

Manuel's parents hope to bring recognition to the phenomenon.

In March, they submitted a petition to the House of Commons, asking Parliament to name April 26, the anniversary of their son's death, National SUDC Awareness Day.

They have collected more than 900 signatures from across Canada, so far. The petition is open for signatures until July 17.

"We'd like to be able to raise the kind of awareness that SIDS got in the 80s," Panneton said.

 SIDS rates have dropped dramatically since then, primarily because of the promotion of "safe sleeping" — placing babies dressed in a sleeper on their back, alone, on a firm mattress, not surrounded by toys or pillows and left uncovered.

"We'd like the same kind of awareness to be brought for us," he said.

Moving forward

The family of three will soon become a family of four again. Fuentes is expecting to give birth to a girl in July.

However, life will never be back to normal in their household.

"The toughest part for me is getting Héloïse up in the morning," said Panneton. "Just opening that door ... it just brings back all those memories."