It was after dark about two years ago when midwife Jay MacGillivray got a phone call from staff at St. Michael’s Hospital, where she works, asking her to help care for an HIV-positive patient who had just arrived and was in labour.
The woman had shown up that night after being sent away from another hospital in the Toronto area. She was having contractions and had been in the middle of a fetal monitor test when the on-call doctor at the first hospital learned that she was HIV-positive – and discharged her almost immediately. She was told within earshot of other patients to find her own way to St. Michael’s, where a midwife who specializes in working with HIV-positive women would care for her.
Ms. MacGillivray hurried to the hospital to join the medical team caring for the woman, who was clearly upset by her treatment earlier that night. The baby was delivered safely.
But the midwife was deeply frustrated by what had happened to the woman that night. “It is so gobsmackingly awful,” Ms. MacGillivray. “They didn’t call, by the way, to say she’s on her way. She simply showed up.”
While that type of incident is rare, stigma against people who are HIV-positive can still be a concern in health care settings, she said.
In an effort to counter negative attitudes toward HIV-positive pregnancy, Ms. MacGillivray and obstetrician Mark Yudin developed a unique program for HIV-positive women to meet their medical needs and support them through the pregnancy. The program at St. Michael’s Hospital couples basic maternal health care with a mix of social services, counselling and companionship.
Now in its seventh year, the Positive Pregnancy Programme is attracting international attention, with the clinical team receiving requests to speak about their work at conferences around the world. And a Canadian researcher is evaluating it, in part to determine how well the model might work in other locations.
About 230 HIV-positive women gave birth in Canada in 2011, according to the Public Health Agency of Canada. Researchers say a significant proportion of those births are concentrated in Toronto, where an estimated 25 per cent of all HIV-positive Canadians live.
During the program’s early years, Ms. MacGillivray and Dr. Yudin saw just three to five women per year. In 2012, they helped 44 women give birth, and they expect the numbers will grow as some of those women return to have second or third babies.
“We’ve had women come to us in their first pregnancy and just be so relieved that there was a place where there wasn’t judgment, where there was a place where they got good care from people who are familiar with the care,” Ms. MacGillivray said. “And it helped them make the decision to have subsequent kids.”
None of the mothers who have participated has given birth to a child with HIV. That could change eventually, Ms. MacGillivray points out, but if basic precautions are taken throughout the pregnancy and birth, the chance of passing the virus on to a newborn is less than 1 per cent. Anti-retroviral drugs help keep the mother’s viral load down and significantly lessen the chance of infection, and the newborn is given medication until it is about six weeks old. HIV-positive mothers are also instructed to use formula instead of breastfeeding.
Ms. MacGillivray says the motivation for the clinic came from her own experiences as a midwife, where she frequently saw health-care professionals treating HIV-positive pregnant women with contempt or fear. Some aren’t aware of how low the risk can be, and expectant mothers often face stigma from those who believe they’re taking an inappropriate chance with their child’s health.
After a nurse told her not to touch a woman she was caring for because that woman was HIV-positive, Ms. MacGillivray decided she had had enough. She found Dr. Yudin, an obstetrician and gynecologist at the hospital, and asked him to start a new clinic with her.
Ms. MacGillivray and Dr. Yudin refer to the clinic as an “expanded model of care” because they work with the expectant mothers on anything that’s troubling them, ranging from problems with their immigration status or trouble in a relationship to difficulties finding housing. Often, clinic staff find themselves serving as confidantes or simply offering a shoulder to cry on.
Mona Loutfy, an infectious disease expert who specializes in HIV and pregnancy planning, has sent more than 30 of her patients to the program, which she calls a “totally different experience.”
“Since my patients have been going to the program, it’s been incredible,” she said. “I have some fairly marginalized patients: drug-using, others who have just arrived in Canada. And just the care and the empathy that the whole program shows really contributes to these women, which also contributes to the health of the baby.”
Dr. Loutfy has published research with Dr. Yudin that found most obstetrician-gynecologists and infectious disease specialists have positive attitudes to supporting HIV-positive women through a pregnancy. “What’s not changing are general public views,” she said. “I think there’s a real lack of knowledge in the public, and that lack of knowledge leads to fear, which leads to discrimination.”
The clinic operates one day each week and sees a combination of HIV-positive women and some of Dr. Yudin’s other patients, who are not HIV-positive – an arrangement designed to protect the women from having to publicly identify with the disease.
Expectant mothers see Ms. MacGillivray and Dr. Yudin during regular check-ups, as well as a nurse and social worker who help them with social services and other concerns.
Tina, a participant in the Positive Pregnancy Programme who asked that her name be changed to protect her identity, was new to Canada and living in a Toronto shelter at the time she became pregnant a little more than two years ago. She discovered that she was HIV-positive through a routine medical test administered to refugees upon their arrival in Canada.
As a newcomer to Toronto, she had few friends to discuss the pregnancy with, and no one she felt comfortable enough to disclose her HIV status to. A doctor referred her to the Positive Pregnancy Programme early in her pregnancy.
“They take care of everything,” Tina said of the program. “There was nothing to worry about. You just take care of yourself.”
At the end of her first appointment with the clinic, Tina said Ms. MacGillivray handed her a taxi chit and told her to visit a local resource centre. “From that time, [it] was one connection to another and another,” Tina says. “And they are still there, up to now.”
Tina’s son is healthy and nearly 18 months old now, and the programs the clinic connected her with continue to help her get access to diapers, toys, and even parenting seminars. She sees a family doctor now, but has kept in touch with Ms. MacGillivray on a personal level.
Trent Newmeyer, a Brock University professor who is evaluating the program this year through a series of interviews with women who have participated in it, said he isn’t aware of another HIV support program in which an obstetrician and midwife are working together to provide care. He said he hopes the study will help improve the Toronto clinic and give other health care providers tools to develop similar programs.
“Every time Mark and Jay do a presentation, across Canada or across the world, people are like, ‘Wow, this is so great. How do you do it?’ ” he said.
For Ms. MacGillivray, the clinic’s work represents a shift in the way the medical establishment views HIV/AIDS: In Canada and many other countries, the virus is no longer a death sentence – it’s an illness that can be managed and lived with. “And part of living with [HIV], for many women, is having children.”