Lisa Plouffe wanted to take a copy of the ultrasound image with her, knowing the baby inside her wouldn’t be coming home. She was three months pregnant and had just found out she was having a miscarriage. That little grainy photo would be the only picture she’d ever have of Maci, the daughter she would never know.
But the ultrasound techs told her that print-outs were only for women with appointments, and Plouffe was there as an emergency. Their answer? No.
Jeannie van den Enden was already in her second trimester when she found out her unborn daughter had died. She sat with her obstetrician and made the difficult decision to deliver her stillborn baby at home. When they were done talking, the doctor stood to leave, squeezed her shoulder and said jovially, “Have a good one!”
For both women, the trauma of their miscarriages was exacerbated by a distinct lack of compassion and support on the part of the doctors, midwives and nurses who cared for them. What’s worse is that their shared experience tends to be the norm, rather than the exception.
We know this, with a degree of certainty, anyway, thanks to a research survey recently completed by the Pregnancy and Infant Loss (PAIL) Network, part of the women and babies program at Sunnybrook Health Sciences Centre, with Jo Watson as the principal investigator. More than 600 Ontario families shared their experiences with pregnancy loss in one of the first comprehensive Canadian studies to analyze, from the perspective of families, the quality of care offered during and after miscarriage.
The results were eye-opening, according to Michelle La Fontaine, program manager at PAIL.
More than half (53%) of respondents said they didn’t feel they were treated with kindness and respect by their health care providers, and 72 percent—a “staggering number” according to La Fontaine—weren’t given information about what to expect, or how to find support.
“It was surprising the degree to which families felt stigmatized, and the degree to which families identified their care was not meeting their needs, particularly families who experienced a first trimester loss,” she says.
Plouffe knows this stigma all too well. She lost her first baby when she was a teenager, and that loss—as well as the cold, detached way she was treated by her nurse—haunted her for years. When she experienced her second miscarriage, she was married with a young son, and dreamed of adding to her family. This time her treatment was even worse. For example, the examining doctor sat down beside her and began touching her body without introducing himself or explaining what he was doing, an experience that left her feeling violated. He also answered two personal phone calls while in the midst of explaining to her that her baby had died. The nurse who brought her a glass of water ahead of her ultrasound was just as curt.
“I was devastated to have lost this baby,” she says. “I was bent over crying, and this woman just comes over (with a cup), no gesture of empathy and connection. She was devoid of compassion and understanding.” What's more, Plouffe was sent home with no information or resources.
Van den Enden said her experiences echo those of Plouffe, and so many of the respondents of the survey. Earlier this year, she lost her seventh baby, whom she chose to deliver in hospital after a previous and traumatic miscarriage at home.
“It’s always been very important to us to see our babies and hold them, even if they’re born not alive,” van den Enden says. “[Doctors] kept referring to our baby as ‘product of conception’. I remember lying on the table and just crying and saying, ‘You are talking about my baby’."
At that point, she recalls, a nurse came over and hugged her and said, ‘Don’t worry, I’m going to make sure your baby is taken care of’.”
“It’s those little tiny things that mean so much when you’re in the middle of a difficult time,” says van den Enden. “And it doesn’t take much—it’s just a matter of wording that could add a whole other layer of compassion.”
Given how common miscarriages are—it happens to one in four women—it’s surprising the system has been failing women for so long. “What happens in those moments in hospital will stay with those families for the rest of their lives,” La Fontaine says. “All that families want is for someone to tell them ‘I’m so sorry for your loss’, and to treat that loss like it’s a baby, not a ‘product of conception’.”
It’s that level of compassion—like referring to a baby as a baby—that PAIL is working hard to improve. The passing of Bill 141, which was introduced by MPP Mike Colle and mandates that the Ministry of Health invest in research and support for families going through miscarriage, has helped tremendously.
PAIL, which has received funding from the Ministry to conduct research and expand programs, offers compassionate care workshops for hospitals and clinics, something health care providers seem to desperately want, La Fontaine says. “They were all asking for more education, more training, more tools to do a better job… and minimize potential trauma,” she says. “(Compassionate care) can mean the difference between developing clinical depression, or knowing ‘I’m not the only one, and I can talk to someone any time I want’.”
“There’s a direct link between the level of care you’re given at the hospital and the way in which you recover, and your grief,” adds Plouffe, who has taken her grief and her frustration, and turned it into action. She facilitates the PAIL peer-led support group in Peterborough, Ont., for families who have lost a pregnancy or baby.
Recently, Plouffe helped organized a butterfly release for grieving parents, which was attended by an elderly couple. “A 90-year-old man openly wept during the ceremony, and said it was the first chance they had had to honour the baby they had lost," she says. Such is the level of silent grief that many families carry with them.
All three women agree that doctors should offer care kits for families to take home from hospital, with pamphlets about what to expect during and after their miscarriage, as well as information on how to find peer-support groups. Right now, no such mandate exists, although PAIL does provide pamphlets and support groups for anyone who asks.
They’d also like to see more hospitals hosting compassionate care workshops for staff. “A lot of the time nurses are in tears (at these workshops), saying they just didn’t know what to say, what to do,” says Plouffe.
Some hospitals are currently looking to create dedicated early pregnancy assessment departments, says La Fontaine, which would divert women from emergency rooms, allowing them to be assessed by dedicated and compassionate staff on a priority basis.
For most families who have lost a pregnancy, what they really want is for people to recognize that their babies were important to them. They existed, they were loved, and they mattered, even though their lives didn’t come to pass.
And the little things that health care providers do and say matter, long after that family has returned home and tried to pick up the pieces of their loves. One compassionate word can alter their memory of that trauma forever.
“Miscarriage is such an isolating experience,” Plouffe says. “It’s just not talked about. And no one should feel ashamed for grieving the loss of a baby, even if that baby was never born.”