For Paula Harmon, Gardens of Grace is a labour of love.
She started the non-profit in 2017, shortly after the loss of her three-year-old daughter Grace, who died of complications that arose from her premature birth.
It was the family’s second loss. Grace’s fraternal twin passed away at 17 weeks’ gestation, due to a food-borne infection during pregnancy. In the hospital, Harmon said she received little support or direction on how to cope with her grief.
“We were given some papers in the hospital that we didn’t read, that we tossed away because we didn’t want to think about it,” she explained. “There was no emphasis on memory-making, there was no advice given as to where we could get information.”
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Gardens of Grace aims to fill in that gap, offering community-led peer support and information for parents. The group is working on brochures to de-stigmatize the topic and advise employers and extended family on how they can help others going through pregnancy, child and infant loss.
It also has a crafting group that makes outfits for infants who are too small for commercial clothing. It’s important for memory-making, said Harmon, an import part of the precious time spent between parents and their baby, before the baby is taken away.
It’s a service Jessica Weatherbee, who crafts for Gardens of Grace, wishes she had when she lost her son at 23 weeks.
“We had just an over-sized sleeper to dress him in, so we had kind of tucked it in on the sides and tried to make it look nice so when we took pictures, it didn’t look like he was just engulfed in clothes,” she told Global News.
Sewing tiny outfits for other parents, she added, is therapeutic.
“When you lose a baby it’s kind of like your way of being a parent to them. So you just make these things to try and make these experiences better for other parents who had to go through it.”
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Gardens of Grace also goes to bat for systemic change. At the federal level, it has joined a community of advocates calling for changes to Employment Insurance that would provide income support for up to 15 weeks for parents grieving the loss of an infant child.
It’s one of the recommendations that came out of the HUMA Committee’s report to the House of Commons on improving bereavement care for parents.
“Currently, if a family loses a child after it’s been born and, say, the dad is on parental leave, he has to go to work the following week. His parental leave is cut off immediately,” said Harmon.
In Nova Scotia, the group advocates for standardized protocols in the care of grieving parents, and mandatory, regular bereavement training. The existing approach, Harmon said, is piecemeal.
“If a parent comes in on one shift, they may be treated totally different than a parent that comes in on the next shift, just depending on the mindset of the nurse, possibly, because there is no set standard of care for loss,” Harmon explained.
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Asked about the possibility of implementing such services, Health Minister Randy Delorey said he wasn’t sure what the existing policy is, but recognized the challenge for parents dealing with loss.
“I think in terms of the frontline operational policy, I’d have to check in with the Nova Scotia Health Authority which runs the health care facilities in terms of the health care policies they’d have in place for their staff,” he said in an interview.
Global News reached out for comment on this story from the NSHA and IWK Health Centre, but neither had anyone available for an interview before press time.