More support for pregnancy, infant loss needed, advocates say

Warning: This story contains distressing details about pregnancy and infant loss. 

Just days after Nicole Shannon told her family that she was pregnant, she went for a regular checkup and learned she had an ectopic pregnancy.

She had to have emergency surgery to end the pregnancy. It was her eighth pregnancy loss in six years.

"I was absolutely devastated," she said. "I remember saying to the nurse at the time, 'I'm just so broken. I don't want to be broken anymore.'"

Shannon was living in Pemberton, B.C., at the time and said finding support was not easy.

Now living in Kelowna, she and seven other women have launched the Okanagan Pregnancy and Infant Loss Support group in an effort to educate health professionals and offer help for grieving families so that others feel better supported should they go through something similar.

While more and more groups and charities focused on supporting people going through pregnancy and infant loss are popping up, advocates like Shannon say more needs to be done to prevent individuals and families from feeling isolated.

Stigma

Laura Spencer, a fertility coach in Vancouver, said if an individual, couple or family are going through this type of loss and don't have people in their lives who have experienced it themselves, it can be isolating.

"Even if you know it's not your fault, you know they've told you it's a chromosomal issue, or you know specifically why you've had that loss … it's really easy to feel like it's your fault," Spencer said.

According to the Society of Obstetricians and Gynaecologists of Canada, 15 to 20 per cent of pregnancies end in miscarriage. Pregnancy loss after that time is defined as a stillbirth, which Statistics Canada estimated occurred in roughly eight out of every 1,000 pregnancies in 2018.

That internal feeling and pressure, combined with harmful rhetoric online and even within families, makes it even more difficult for families going through this, she said.

Combating that stigma starts with sex education, Spencer said.

"We don't necessarily learn about miscarriage, infertility, pregnancy loss, infant loss," she said. "We usually talk about how not to get pregnant."

Spencer said the rhetoric around reproductive rights in the U.S. and beyond also plays a role in people feeling ashamed about their loss.

"[It] certainly doesn't help de-stigmatize miscarriage," she said. "It all contributes and reinforces that narrative."

And society, she said, can be awkward or uncomfortable with grief in general.

Finding community

In 2021, Marise Knoesen lost her pregnancy at five months due to a rare condition.

Because it was the height of the pandemic, gathering with loved ones to grieve was difficult. So, she turned to social media, where she connected with other people who had been through something similar.

"It was my lifeline," she said.  "I'm so grateful that this sort of tool is available to people because you find people that you would maybe not find otherwise."

Kimberley Lockhart, founder and executive director of Butterfly Run B.C., has been trying to fill some of the gaps in support since 2019.

She launched the initiative two years after her son, Wilder, was stillborn at 40 weeks.

"I was really searching for community, really searching for other people that had stories like mine or that had similar lived experiences. There was next to nothing."

Butterfly Run started as a memorial walk and run in Vancouver to raise awareness about pregnancy and infant loss. More than 500 people joined the cause that first year.

Seven years later, Butterfly Run is a registered charity, and puts on community events, hosts support groups, connects individuals and families with free counselling and more.

Shannon hopes that with initiatives like hers and Butterfly Run, people experiencing this kind of loss won't feel alone.

"You are not broken. You do not need to feel guilt. You shouldn't be shamed. You shouldn't be ashamed of how you feel. You're not doing anything wrong."