It’s a parent’s worst nightmare. Baby goes to sleep and never wakes up.
For Candace Sims, that became an unbearable reality on April 6, 2012. She was visiting her sister in Vernon, BC with her four-month-old daughter Callie just before Easter. When she went to check on her little girl, Sims found Callie lifeless in her crib – the victim of Sudden Infant Death Syndrome, or SIDS.
“You move on, you don’t ever get over it. It’s always there with you,” said Sims, who gave birth to son Daxon just over a year later. “He’s helped me a lot in the process.”
What made things worse for the young mother was being informed by the federal government that her parental benefits had been cut off. Six weeks after Callie passed away, Sims got a letter saying she owed $600 for EI she had received after the death.
“They came back to me and said that because she passed away at the beginning of the month and I got paid for the full month of April that I would have to repay,” she said.
“I was blown away that I was down at my low and the government hit me when I was down and it’s still continuing to happen to other people.”
It’s an issue that affects hundreds of Canadian parents each year. Just how many is not known because some jurisdictions have phased out the term SIDS in favour of the term “undetermined.” Provinces and territories haven’t reached consensus on how to classify sudden and unexplained deaths of babies under one-year-old.
A spokesperson for Employment and Social Development Canada told Global News that since the purpose of parental leave is to care for a newborn or adopted baby, benefits cease the same week a child dies. Maternity leave benefits, which are paid out for 15 weeks around a birth, continue even if a newborn dies because they are designed to allow the mother to recover from the birth, both physically and emotionally.
The only program available to parents who lose children is for those who were missing and murdered as a result of a probable Criminal Code offence. It is a stand-alone grant outside the Employment Insurance program that offers up to 35 weeks of leave. As of last May, most of the money allocated had barely been spent.
For Sarah and Lee Cormier – whose daughter Quinn died at four months old just after Christmas in 2014 – the system is insensitive and unfair to parents whose children die without cause.
“When you don’t acknowledge the child and terminate those benefits it’s like that child never existed,” Sarah Cormier said.
“These children did exist. They did live and their legacies live on. And it’s important to honour those children.”
Lee Cormier points out the money would be paid out if the child had lived.
“The child was here. Just because the child is gone whether it happens early on or later on during the maternity leave, that money has already been put aside so I don’t feel like it’s something that should be taken away immediately,” he said.
Government launching consultations
The Trudeau government is launching consultations on parental, maternity and compassionate care benefits.
“We’re very aware and concerned about this current state of affairs,” said Minister of Families, Children and Social Development Jean-Yves Duclos.
But when pressed, Duclos would not say whether he thinks the specific policy of cutting off parental benefits after sudden infant death is the right thing to do.
“These views are important and they need to be voiced clearly,” Duclos said. “We did signal that we were going to move in the direction of making more flexible and more inclusive parental, maternity and compassionate care benefits and that’s what we look forward to doing in the next few weeks.”
Duclos added an announcement may be coming in early 2017.
Conservative MP Blake Richards is considering a private member’s bill to help parents who lose children to sudden or unexpected causes.
“We’re looking at comparative studies in other jurisdictions, other countries as to what their systems look like,” Blake said. “Certainly I think to try and find ways that we can better recognize the difficult situation that families have, help them get through a very difficult time both emotionally and financially.”
How long do parents need?
Carol Chevalier is a palliative care social worker at Roger Neilson House in Ottawa. She says it’s very common for parents to feel pressured to return to work quickly after the loss of a child.
For some, it’s just what they need as a distraction. But for others, the thought of returning to work causes anxiety and stress.
“Generally speaking parents require at least two months of time away from the work setting to sort out what their new normal is,” Chevalier said. “To cope with the extreme emotional burden they will be experiencing over really the course of their lifetime.”
WATCH: How long do grieving parents need after the loss of a child?
-with files from Laurel Gregory
© 2016 Global News, a division of Corus Entertainment Inc.