Out of the shadows: Addressing the stigma of pregnancy loss

Melina’s journey to motherhood has been filled with heartbreak.

Five years ago, Melina was overjoyed to discover she was pregnant after earlier difficulty conceiving and a pregnancy loss. However, at 37 weeks, she stopped feeling her unborn daughter, Liv’s, karate kicks.

Despite an initial reassuring hospital visit for decreased fetal movement, her second visit ended with her bringing a beautiful, yet silent baby girl to the world. Liv was stillborn.

“When it happens, it is a big surprise,” says Melina, who preferred not using her last name. “But then you go online and you realize how common it is.”

Photo from Chrissy Teigen’s instagram, September 30, 2020

Pregnancy loss mostly has been experienced in the shadows but prominent figures from Meghan Markle and Michelle Obama to Chrissy Teigen are shining a light on the subject, publicly discussing their painful losses. The agony in Teigen’s raw images drew an outpouring of support around the globe and is recognizable to Melina and, unfortunately, for one in four pregnant women who experience a pregnancy loss. Similarly, stillbirths are not infrequent. Approximately six out of 1,000 babies born in Canada are stillborn.

“Loss doesn’t discriminate. It can impact anyone,” says Haley Blumenfeld, a social worker who has worked with mothers in these most intimate times experiencing pregnancy loss.

Laurie Soares, a bereavement nurse at Credit Valley Hospital, says the grief extends beyond stillbirths to miscarriages and infertility issues.

“Every time they get their period, that is a loss they are experiencing as well,” says Soares. “They need the support too.”

Milena Forte, a family medicine physician at the Mount Sinai Hospital and the maternity care lead at the Department of Family and Community Medicine at the University of Toronto, adds that women who choose not to continue a pregnancy, for whatever reason, also experience loss.

Although loss unfortunately is a normative outcome of pregnancy, many families worry that others will not understand their profound grief. Some do not want to burden their loved ones with the discomfort of pregnancy loss only to be acknowledged with awkward platitudes. Still others feel culpable, scrutinizing their previous actions to explain their unexplained loss, whether it be the extra box they lifted or the extra mile they ran.

“Many women feel a sense of disempowerment,” says Forte. “My body failed me. Something is wrong with me.”

However, studies have shown that most pregnancy losses are not preventable and are caused by genetic abnormalities. “I thought I could save her,” says Melina. “There is guilt but there are little things that healthcare professionals will slowly chip away at. But if you don’t hear that, you will continue to feel guilty.”

Perhaps most disappointing is the role that healthcare providers play in the culture of silence around pregnancy loss.

Michelle LaFontaine, who lost twins while five months pregnant and is the Program Manager of the Pregnant And Infant Loss (PAIL) Network, an organization offering support services for families following a loss, says that 51 per cent of families felt stigmatized by their healthcare providers and 72 per cent of families said they did not receive the follow-up information that they needed.

COVID-19 has further heightened feelings of isolation. Women are now enduring the painful first moments of their loss without their loved ones in the emergency departments or in the palpable silence of the absent heartbeat at their ultrasound appointment.

Melina credits support groups helping her through her grief.

“I think people who have experienced loss want to talk about it, especially to others that experience it,” she says. “You need to connect with other people. Not only people who are living in the now but people who lived it 10 years ago or five years ago.”

Ontario is the only province in the country that has mandated funding for services to support families through pregnancy and infant loss. Elsewhere, patients must rely on grassroot organizations or private companies for support services or, as often happens now, turn to social media. Families living in more rural regions, where resources are scarce, often have to scramble to find support services in their most vulnerable times. When Melina experienced her loss, she had to travel across Montreal to attend a support group despite birthing her stillborn baby at one of the city’s largest tertiary care hospitals.

Soares says bereavement programs in hospitals are limited and lack the funding they need, noting they are considered to be time-consuming, costly, take up nursing manpower and lengthen hospital stays. However, research has shown that in supporting these families through their time in hospital, these same families often will financially contribute to the programs in the future.

There is a striking emptiness that patients may feel leaving the hospital. But bereavement programs provide families with photographs, molds of feet and memory kits as mementoes for the families that stay behind.

“All they are going home with is the care that we give them and the package and the memories that we build for them,” says Soares, who runs the bereavement program at Credit Valley Hospital. “It is up to those nurses and those doctors to decide what kind of effect we are going to have on those families. Even though it is something tragic, we can build good memories for that family that will last a lifetime.

“They are not just something that happened but are actually a person that was born and that was important.”

LaFontaine says there is a need for medical schools and residencies to include pregnancy loss and bereavement training in formalized curriculums for all healthcare providers. If more than half of bereaved families feel stigmatized by the healthcare community, it stands to reason that this community is contributing to the silence and feeling of shame.

LaFontaine adds that given one in four pregnancies end in loss, it is safe to assume that healthcare providers will encounter a family that has experienced a pregnancy loss at some point.

One initiative is the Compassionate Care Workshop at PAIL that offers educational sessions for practitioners to provide culturally competent care to bereaved parents and families. “We are often so worried that as professionals, we will say the wrong thing or do the wrong thing. There is a lot of anxiety around how to properly do this,” says LaFontaine. “In the Compassionate Care Workshop, it really just is about connection and being present with the family”

Blumenfeld notes that simply sitting with a mother is helpful in helping her navigate her journey of sadness and grief.

Forte adds that healthcare professionals must shed their assumptions and make room for all types of grief.

“One thing I’ve learned is to not go in with a predetermined sense of what this person needs given the loss,” says Forte. “Not to underestimate and sometimes not to overestimate the effect that it is having on them. You need to meet patients where they are at (emotionally).

“We sometimes make assumptions about how the loss has affected them, perhaps based on how we feel on their behalf. It is so much more important to ask: ‘How are you feeling?’ ”

Melina now has a son and is pregnant again. She continues to share Liv’s story.

“It doesn’t mean that she didn’t exist. She’ll turn into a positive force in your life in some crazy way,” she tearfully recalls thinking.

And she has. Whether she knew it back then or not, her intimate story would become a part of many other families’ survival guide.

You can read Melina’s journey with Liv in her own words on her blog post.