Being pregnant while living with HIV comes with a range of different considerations. In this section, we focus on the experiences women had during their current or most recent pregnancy.
This section covers the following areas:
- HIV-related experiences and concerns
- Support and help from others
- Concerns and considerations beyond HIV
The women we spoke with discussed what it was like being pregnant while living with HIV, including the few who were diagnosed during pregnancy. In terms of deciding how they would feed their babies, some women had been thinking about it early on while others only considered it much later in their pregnancy. The 4M Network is a peer-led organisation that supports mothers living with HIV.
HIV-related experiences and concerns
If a woman or birthing parent living with HIV is taking HIV treatment throughout pregnancy and birth, and their virus is fully suppressed (asleep or undetectable) throughout, they can have a baby who is HIV free. To learn more about getting pregnant when you have HIV, see our Resources section. The women we spoke with had varying levels of knowledge about HIV and pregnancy. Some had been very worried about transmitting HIV to the baby, like Fatima, who had even considered getting an abortion.
Fatima considered abortion because she was worried about HIV transmission.
Most of the other people we interviewed knew that if they took their HIV treatment as recommended, then their baby could be born without HIV. Research has shown that in women taking HIV treatment before becoming pregnant, all through pregnancy and delivery, with a viral load of less than 50, the risk of HIV transmission to the baby is less than 1 in a 1000.
Although the HIV diagnosis was a significant shock for Amina, finding out at the same time that she was pregnant made her very happy and helped her cope with it better.
Amina was diagnosed with HIV and found out she was pregnant the same day.
Sandra did not start taking HIV medication until a few years after being diagnosed. Once she had started HIV treatment, she asked her clinicians about starting a family. Delaying starting treatment for HIV is not recommended by health professionals – women (and birthing parents) need to be on treatment for their own health, not just for their babies. Also, some women (like Amina) may only be diagnosed during pregnancy.
Sandra began HIV treatment years after her diagnosis when she was considering getting pregnant.
It can take some time to work out the most suitable HIV medications for women to take during pregnancy. For example, Marella and Kay experienced severe nausea, which affected taking their HIV medication and their viral load, which they found stressful. LeaSuwanna’s HIV medication changed because it interacted with another medication she takes for an underlying health condition. However, when she got pregnant, it had to be changed again as it was not recommended during pregnancy.
Kay had a difficult pregnancy with severe nausea.
Generic HIV medications are the same as proprietary ones (medications which are patented) but are much cheaper to buy and may look slightly different. LeaSuwanna mentioned that the lack of evidence for the safety of certain medications during pregnancy is a problem. This is the reason why there is now greater understanding about the need to include more pregnant and breastfeeding people in medical trials for HIV treatments.
Talking to others (or not)
We spoke with women about whom they had discussed their pregnancy with, and the kinds of conversations they had had. Many recalled their medical team reassuring them that they could give birth to a baby without HIV. They also discussed their infant feeding options with their HIV doctors and midwives (see Conversations with HIV clinicians about infant feeding and HIV). Wanting to speak in depth about starting a family, Holly had requested a female doctor. Meanwhile, Marella was so keen to try breastfeeding, having formula fed her first-born child, that she hired a lactation specialist for advice.
Holly changed to a female doctor to start conversations about having a family (played by an actor).
While talking with us some women recalled their concerns about how to manage family or friends finding out about their HIV status during pregnancy and after giving birth. This was especially so where relatives and friends were often keen to help or give advice about infant feeding and the best way to raise a baby.
Amina is early into her pregnancy and is worried about questions from her mother and mother-in-law.
Considerations beyond HIV transmission
The risk of transmitting HIV to their baby was not the only concern that women had. As with all new mothers, some women we spoke to shared other thoughts about their pregnancy and about their babies overall health as well as their own. For example, Kay thought about how well she would bond with her baby and stay mentally well herself.
Kay was having a difficult pregnancy and was concerned about her mental health.
Some of the women we talked to, like Holly and Fatima, discussed how HIV had traumatised their personal lives and scarred their sense of self. Women also talked about the burden of living with HIV and worrying about HIV transmission through during pregnancy, childbirth or breastfeeding. For Emma and Camille to have a baby that was HIV-free felt like a new beginning, and they saw it as a wonderful and welcome opportunity to completely change their life stories.