A Nova Scotia woman who recently lost two children will be heading to Ottawa this month to urge the federal government to give more support to parents dealing with the loss of a child or pregnancy.
Paula Harmon of Dartmouth, N.S., said there's little access to specific groups to cope with losing a pregnancy or baby, and those parents may feel out of place in standard support groups.
"There are bereavement groups, but a parent who has lost a child at 17 weeks, or 20 weeks, or even a year, feels very out of step with a parent who has had a child for 30 years," she said in a phone interview Saturday. "So they're sitting there with people who have actually had a lifetime of memories and they can't relate."
Harmon's pregnancy with fraternal twins in 2013 came as an "unexpected surprise," but at 17 weeks gestation, one of them died and the other was given a five per cent chance of survival.
Grace was born prematurely, and after some hurdles in her first few months, she hardly had any health problems before her unexpected death from a bowel condition in December 2016.
Harmon remembered her daughter as a bright girl with a penchant for books and music, during her short life.
Last year, she founded Gardens of Grace, an advocacy and support group to help grieving parents understand they're not alone and push for policy changes to make their grieving process a little easier.
"Helping people in Grace's name seems to alleviate some of the loneliness of not having your child there and being a mother without a child," Harmon said.
At the end of the month, Harmon will travel to Ottawa to throw her support behind a motion before Parliament that, if passed, would instruct the Standing Committee on Human Resources to study the impact of infant loss on parents and recommend that government improve the level of support for grieving parents.
"It directs (the committee) to hear from parents who are affected, to hear from organizations that advocate for those parents, to hear from grief counsellors, and to hear from those who design the programs involved," said Alberta MP Blake Richards, who will introduce the motion on April 27.
"Rather than presume we know the answers, let's hear from everyone and make the best decision on this."
Richards said one of the biggest issues is that EI parental benefits are cut off after the death of a child and any money received through those benefits after the death has to be returned.
"You can only imagine how much anguish it must add to what parents are experiencing," he said. "The simple fix would be to simply allow parents to have the opportunity to have a little extra time to grieve."
Employment and Social Development Canada was not immediately available for comment.
Since Gardens of Grace became incorporated in August, it has blossomed to include seven board members, a Facebook group with more than 400 members, and a crafting group for members to make clothing for bereaved parents to bury their infants in.
In October, the Nova Scotia legislature passed Bill 38, recognizing Oct. 15 as Pregnancy and Infant Loss Awareness Day.
Harmon said her group helped push the bill forward by contacting every municipality, town and district in the province and asking them to pass proclamations in support of the bill. Twenty-eight of the proclamations passed throughout the province.
She said recognizing this day is a step in the right direction.
"It's a start at giving voice to a very silenced subject. It validates what the parents go through," she said. "It helps recognize that there is an issue."
Meanwhile, Meagan Chaffey, who is being trained as an infant and pregnancy loss doula, said there is a need for more people in the field with these skills.
"It's estimated that one in four pregnancies end in miscarriage," said Chaffey, who also is working with Gardens of Grace to create a peer support network across Nova Scotia.
"There's been a big gap in the training of doulas and being able to assist women with this."
While the issue isn't uncommon, Chaffey said infant and pregnancy loss is still a taboo subject, and that people don't know what to say to parents in that situation.
She said insensitivity and a lack of education when dealing with grieving parents can further isolate them.
"One of the common refrains for women who lose a pregnancy is 'when will you get pregnant again?'" she said. "And that kind of negates the fact that they had love and care for that child that was already in their belly and that child mattered."