Helping mothers—and the medical system—move forward after miscarriage and pregnancy loss

When Jamie McCleary, 34, of Tottenham, Ont. went in for a 13-week ultrasound while pregnant with her second child, the technician clammed up and refused to answer any of McCleary’s questions or to provide a photo of the baby. “‘Go home and call your doctor’ was all we were told,” McCleary explains.

After a few frantic calls, the McClearys were scheduled for an appointment later that day, where the doctor delivered crushing news with no bedside manner—and few instructions for after care. “She just said, ’Your baby’s dead,’” recalls McCleary. “Then she gave us a prescription for Misoprostol (a medication often used to induce labor) and told me that if there was heavy bleeding, to go to the hospital.”

McCleary’s pregnancy ended en route to the ER after seventeen hours of painful labor at home. “The baby was delivered in the car, so we went back home and I spent hours on the phone with Telehealth trying to determine if I was hemorrhaging,” says McCleary.

Once it was determined that she was, in fact, bleeding too heavily, she drove herself to the ER and waited there for twenty-fours hours for a D&C. “When it was all over, no one gave me any guidance regarding what to do next or how I should take care of myself. I felt like I was totally on my own.”

Ask a woman in Canada who’s experienced pregnancy or infant loss, and chances are her story isn’t much different. Uneven and insensitive care, little to no instruction for follow-up, and virtually no counselling or emotional support are offered.

“Our medical system lacks equitable access to compassionate care,” says Wendy Moulsdale, a Pediatric Nurse Practitioner who works in the Neonatal Intensive Care Unit at Toronto’s Sunnybrook Health Sciences Centre and who also volunteers with the Pregnancy and Infant Loss Network (PAIL). “It’s hit and miss from one hospital to another. Nothing is standardized—not within the province or the country.”

And that’s a problem since there are 7.2 stillbirths per thousand in Canada, and BC Women’s Hospital +Healthcare Foundation estimates that more than 15-20 per cent of all clinically recognized pregnancies end in miscarriage. “For healthcare providers, miscarriage and infant loss is often totally normal,” says Michelle Lafontaine, PAIL Network’s Board President. “But for those who experience it, it can be traumatic. And just as women who have a healthy baby leave the hospital with a discharge and care plan, so, too, should women who have experienced a loss.”

But on December 8, 2015, the Ontario legislature passed the Pregnancy and Infant Loss Awareness, Research, and Care Act (Bill 141) in addition to designating October 15 Pregnancy and Infant Loss Awareness Day. The law will increase funding for the research into the cause of stillbirths and pregnancy loss in addition to improving counselling, and expanding programs for high-risk pregnancies. At present, the Ministry of Health is holding meetings to determine specifics, and there’s great reason to be optimistic.

John Barrett, MD, Chief of Maternal-Fetal Medicine at Sunnybrook Health Sciences Centre, addressed representatives from both the Ministry of Health and the Ministry of Women’s Issues and believes priorities include safeguarding existing high-risk pregnancy programs, and ensuring that information about current best protocols and practices is widely disseminated.

“At this point, we actually have the ability to prevent so much perinatal loss and preterm birth,” says Dr. Barrett. “And since much of what we do in a program like ours is teachable and translatable to other hospitals, that’s one of the main things we hope the bill will facilitate.”

Other important outcomes that hopefully will result from the new law: Changes in medical school and nursing curriculums so that more sensitivity training and awareness of existing programs is included. “Right now, most medical professionals don’t know what to say to a family when a baby dies,” points out Wendy Moulsdale.

And that’s when the platitudes come out—phrases like ‘You’re young, you can try again’ and ‘It’s not like you really knew this baby, he was only 12 weeks old.’ “People think they’re helping because that’s what gets said in the movies and on TV,” says Moulsdale. “But those comments don’t acknowledge that there was a death and that a family is grieving.”

And though the PAIL network currently offers training sessions—which include testimonials from parents who have had hard experiences—to professionals who are keen to include more empathy in their interactions with patients experiencing loss, it’s currently entirely dependent on donations, grants and money raised by fundraising and therefore can’t reach a critical mass of health care providers.

“This whole situation really needs to be addressed in nursing training and other medical education,” Moulsdale says, which would include midwives, doulas, ultra sound technicians, emergency room doctors, and hospital personnel. And as for awareness of existing programs, many healthcare professionals aren’t familiar with them, and therefore don’t know to refer on their patients. The passage of Bill 141 will aim to address that, too.

So change is on the horizon in Ontario, but what about the rest of the country?

“We already know that ongoing support through high-risk pregnancies and loss results in better pregnancy outcomes in the future,” explains Stephanie Fisher, MD, the medical director of the Reproductive Medicine Program at BC Women’s Hospital, which includes the Early Pregnancy Assessment Clinic and the Recurrent Pregnancy Loss Clinic, the only such centres in western Canada, “which is exactly why better training and improved access to services need to happen just about everywhere.”