Pregnancy with HIV: Breaking down barriers and overcoming stigma

Maria had always wanted to be a mother. But when she became pregnant, happiness was replaced by anxiety. “I was afraid for my child,” she says.

In May 2024, Canada issued Guideline No. 450: Care of Pregnant Women with HIV Infection and Intervention in Prevention of Perinatal Transmission to enhance the care of these women and reduce transmission. Despite the significant progress of antiretroviral therapy (ART), many women continue to experience stigma, have difficulties assessing health care and struggle with the management of their treatment, especially for pregnancy planning.

“The doctors told me that the risk is low if I keep taking my medicines, but the fear did not subside,” says Maria, who lives in Toronto but was born in Congo.

Stigma and ignorance can make pregnancy a lonely experience for women living with HIV. While clinical guidelines are available to help health-care providers counsel women living with HIV on family planning and safe conception, conversations about pregnancy intentions remain uncommon and often carry stigma.

Access to accurate information and health care is essential in family planning, but for women living with HIV, it is even more critical due to the complexities of antiretroviral therapy, potential drug interactions, transmission risks and the need for continuous medical care. Despite this, 56.4 per cent of women (657 of 1,164) receiving HIV care in Canada have experienced gaps in comprehensive services, with discussions about reproductive goals being the most commonly overlooked aspect.

“I had to do a lot of my own research,” says Maria. “Some of the general prenatal care providers did not have a very in-depth knowledge of how to plan pregnancy with HIV. I was lucky to get a supportive infectious disease specialist, but I wish the info had been more easily accessible, especially on how to go about planning a safe pregnancy.”

Maria’s case highlights the need for more integrated care and better approaches for dissemination of information to empower women in their reproductive choices.

“I had one OB-GYN who looked uncomfortable after seeing my medical history,” she says. “The risks she kept repeating felt more like judgment than medical guidance. In the end, I found a provider who was experienced in HIV care and made me feel supported and focused on the health of both me and my baby. But it took time to find that support.”

Pregnancy also brought unexpected complications. “I was having morning sickness and could not keep my medicines down. There were some days when I could not eat anything at all and it made me worry that if I do not take my medicines, it will affect the baby. My doctor was able to help me change my schedule, but it was a stressful process.”

Though Maria had mentally prepared herself for labour, what she hadn’t expected was the unease from some of the hospital staff.

“Some of the nurses at the hospital didn’t know what to do with me.”

“Some of the nurses at the hospital didn’t know what to do with me,” she said. “One of them even asked if special precautions were necessary, as if I was some kind of danger. But my doctor told me and the nurses that standard precautions were enough for me.”

After her baby was born, Maria had to make one of the hardest decisions for her. “In Congo, I was told that it was safe to breastfeed as long as I remained on my medications,” she says. “In Canada, doctors said it was not recommended. I was between a rock and a hard place with two different recommendations. I used formula but I wanted more guidance and support in deciding between the two.

HIV-related breastfeeding information is intricate and typically accompanied by anxiety. More thorough and tailored outpatient education could assist women in making informed decisions regarding their medical condition and motherhood.

Postpartum care is often overlooked, yet it is crucial, as some women living with HIV face challenges adhering to antiretroviral therapy, leading to suboptimal viral load suppression.

HIV care continuity, together with mental health care, may lead to better results for both mothers and their children in the long run.

Maria noticed that her medical team was suddenly only concerned with her child. “After my baby was born, all the attention was on (the baby). I was happy, but I felt like I was alone with my health issues. I was so tired that I missed some appointments. I think there should have been more attention paid to new mothers like me.”

Maria’s experience highlights the need for better training on HIV management in maternity care. No woman should feel like an outsider or unwanted during the very time when she is bringing life into the world.