Grieving parents face isolation, anxiety after unexplained deaths of children

A U.S. foundation started nearly 20 years ago to collect information about sudden, unexplained deaths among children is still looking for answers.

U.S.-based foundation offers support, calls for publicly funded research into tragic phenomenon

Samuel Ross Doucett died suddenly in his sleep on May 6, 2017. Even after an autopsy and investigation, his death remained unexplained. (Rick Tizzard)

As we reported earlier this week, it's been a difficult year for Christa Reccord and Blake Doucett, whose two-and-half-year-old son Sam died in his sleep last spring.

An interview with Reccord and Doucett sparked a lot of questions about why, and how, such tragedies happen.

Among those looking for answers is Laura Crandall, the co-founder, president and executive director of the New Jersey-based SUDC Foundation — the acronym for Sudden Unexplained Death in Children — which was started nearly 20 years ago to help collect information about the phenomenon.

It's something she knows first-hand. In 1997, Crandall's first daughter Maria, who was 15-and-a-half months old, died suddenly in her sleep.

"It's sad to hear, tragically, that 20 years later we're still having these stories and we still don't have answers for why they occur," Crandall told CBC Radio's Ottawa Morning Thursday in response to Reccord and Doucett's story.

Blake Doucett, Christa Reccord and their daughter Abigail lost two-year-old Sam when the little boy died in his sleep nearly one year ago. (Hallie Cotnam)

'No one really knew how big the problem was'

"Maria did not wake up from her nap one day, and I wish I could explain more than that, but 20 years later we don't really have a clear explanation of why it occurred.

"When Maria died everyone I spoke with said, 'We've never heard of this before. We've heard of it in infants before but not in toddlers and older children. You're one in a million. This is not something that's really a problem.' ... The more I searched for answers the more I realized no one really knew how big the problem was."

The World Health Organization doesn't track sudden, unexplained, non-suspicious deaths among children older than 364 days of age where an extensive investigation has occurred, meaning estimates are hard to come by.

The foundation estimates that in the U.S., 445 children died under those circumstances in 2016, including more than 200 toddlers.

"And when we look at the leading causes of death in children in that age group, it actually ranks as the fifth leading cause of death in toddlers," Crandall said.

That raises questions, she said. "Why haven't we drawn more attention to it, and why haven't we publicly funded research into understanding it?"

Helping families cope

In addition to calling for more research and data, the foundation helps families cope with their unexplained losses.

It leaves everyone with an amazing amount of uncertainty, anxiety, frustration with the system.- Laura Crandall, SUDC Foundation

"We try to reduce their isolation because it's so difficult for your brain to wrap around this. We don't expect children to die suddenly, let alone for a thriving child to die and undergo immense medical testing and a full investigation by police and forensic pathologists, only for them to come back and say, We have no idea what happened to your child,'" Crandall said.

"We're used to being able to connect the dots, and in this situation it leaves everyone with an amazing amount of uncertainty, anxiety, frustration with the system."

She still misses Maria, all these years later, and she hopes stories like hers will further understanding of the issue.

"If I live to be 100 I will still miss her every day. I wish things were different, but this is the road we've been on and I have three lovely younger sisters for Maria, and Maria is still a part of our family ... and I do hope that her story and other children like her can be told clearly one day, and we can prevent this from happening."

CBC Radio's Ottawa Morning