A parent’s worst nightmare: SUDC, cousin of SIDS, claiming lives of children

Click to play video: 'How long do grieving parents need after the loss of a child?' How long do grieving parents need after the loss of a child?
ABOVE: How long do grieving parents need after the loss of a child? – Oct 5, 2016

Manuel Fuentes-Panneton was born on July 18, 2014, at Charles-LeMoyne Hospital, on Montreal’s south shore.

Twenty-one months later, he was gone — his death, unexplained.

READ MORE: Reducing the risk of SIDS — Should babies sleep in cardboard boxes like in Finland?

“He was a big boy. He had really no known health issues. He had a check-up a week prior to his passing,” Philippe Panneton, Manuel’s father, told Global News.

“He was super healthy, super active, hitting all his milestones ahead of time.”

It was April 26, 2016.

READ MORE: Parents are putting babies to sleep in unsafe positions, study says

Panneton recalls waking up early that morning — about 4:30 a.m. — as his wife got up to nurse their newborn daughter.

Story continues below advertisement

“I looked at the video monitor set up in Manny’s room and he was fine. We could hear him breathing and see him in his bed and he looked OK,” he said.

He went back to sleep and when his alarm went off a little while later, resumed his daily routine — making coffee and breakfast before getting his son ready for the day.

READ MORE: This woman’s baby died in his crib, and now she has a warning for other parents

“I found him cold and stiff. The coroner said he died two hours prior — a few minutes after I would have seen him [on the monitor],” Panneton said.

“It was the worst thing I could have imagined. I have a hard time describing what it’s like. Emotionally, I don’t have the words to describe it.”

“You grow up knowing you’ll have to bury loved ones … but you’re never equipped to lose a child.”

Story continues below advertisement

Unknown cause of death

Sudden Unexplained Death in Childhood (SUDC) is the unexpected death of a child aged 12 months and older.

Though an autopsy is performed, the child and family’s medical history is reviewed and the home is examined, the cause remains a mystery — similar to sudden infant death syndrome (SIDS).

The Fuentes-Panneton family with their son, Manuel. Philippe Panneton

Dr. Aurore Côté from the Montreal Children’s Hospital explains SUDC and SIDS are not disorders — they simply mean no one knows what caused an infant or child to die.

“It means nothing was found to explain the death,” she told Global News, adding that in the last 10 to 15 years the aim has been to look at genes.

“SIDS and SUDC are the sudden death of somebody that was healthy and no one was able to find the cause.”

Story continues below advertisement

Research is currently being done to determine if children who suddenly pass away suffered from a seizure or a seizure disorder.

READ MORE: What’s killing babies in Canada’s North?

“Still, in 2018, we don’t know. The deaths are unexplained, but there’s always a lot of investigation done,” Côté told Global News.

“What scientists do is they gather information on the circumstances of the death, even if we didn’t find the cause in the autopsy — are there factors that are always found or found in many of those kids?”

WATCH BELOW: SIDS and genetic testing

She explained unexpected deaths can occur at any age — from neo-natal to old age — but there is a “peak of death” between the ages of four and five months, which is why more research has been done on that age group.

Story continues below advertisement

READ MORE: Why this photo of a sleeping mom is sparking debate on social media

“The highlight of the last five years is looking at genes more and more,” Côté said.

“We’re in the infancy of looking at genes — or maybe the toddler age — and it’s going to get more and more sophisticated and be more precise.”

Limited research in Canada

Limited information is known in Canada — contrary to the U.S., where statistics show SUDC is the fifth leading cause of death among children between the ages of one and four.

“One reason is that the incidences of it are pretty low,” explained Emily Isaak, executive director of Baby’s Breath, a non-profit organization that provides support, education and advocacy for sudden and unexpected infant deaths.

She explains that, because that number seems so “small,” investigators are hesitant to declare SUDC as a cause of death.

READ MORE: Reducing SIDS risk — New guidelines for moms breastfeeding infants

“‘Undetermined cause of death’ is a diagnosis of exclusion. It’s basically saying, they’ve done their investigation and autopsy and they can’t pinpoint a cause,” Isaak told Global News.

Story continues below advertisement

“It’s a really broad spectrum. You’re not necessarily looking at anything in particular. It makes it challenging to research. They really have no idea what it is.”

Manuel Fuentes-Panneton passed away at just 21-months-old. His death was categorized as Sudden and Unexplained Death in Childhood (SUDC). Philippe Panneton

She said this is a problem because grieving parents don’t always know where to turn.

READ MORE: 7,000 newborns die every day, according to new UN report

“In Canada, we don’t have a great continuum of care when it comes to SIDS and SUDC. They’re basically told ‘so sorry for your loss,’ and they’re sent home with very little,” Isaak said.

“They’re told, ‘We’re sorry, we don’t know why your baby died,’ and they’re sent home. They don’t know if they did something wrong, if they missed a sign. You can’t even imagine the amount of guilt and sadness.”

Story continues below advertisement

Raising awareness

The Fuentes-Panneton family only received the autopsy report from Manuel’s death this year — 21 months later.

WATCH BELOW: Woman shares story of grieving after loss of baby

“We had a seven-week-old daughter, so we needed to be OK. We tried not to think about it while we were taking care of her. We spent so much time away from our daughter when she was napping just, being sad for ourselves,” he said.

They are now working with federal MP for Longueuil-Charles-LeMoyne, Sherry Romanado, to launch a petition asking for April 26 to be declared National SUDC Awareness Day.

“Now, we know a lot of parents who have lost children. It’s a really crappy club, but there’s a lot of us in it,” he said.

Story continues below advertisement
“We never heard about it [SUDC] at all. It’s not something in any parenting books or websites.”

READ MORE: Grieving parents urge Ottawa not to stop parental benefits after sudden infant death

Panneton said he’s not sure if the pain of losing his son will ever go away.

“Even now, for me, the hardest part is going and getting my daughter to give her breakfast, same as I did with my son,” he told Global News.

Reality check: Will swaddling your baby increase the risk of SIDS?

“Every time I see that closed door, I get that moment of PTSD. I know she’s OK, but I still have that apprehension.”

“I think you learn to live with it. It’s always going to hurt, but you learn to figure out how to deal with the pain.”

The deadline to sign the petition is July 17, after which it is expected to be presented to the federal government.

Sponsored content