Current or most recent pregnancy

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.

My point of view for HIV was like, ‘I’m going to die’ and I think, you know, came into my mind that thing because I haven’t studied a lot about this disease and all those things so then when I came over here and when they spoke to me the doctors, you know, when they spoke to me regarding this thing they have explained everything regarding this HIV thing that with the medication it’s just a normal thing, you know, like as if you are a diabetic patient.

It’s just taking the medicine, so they have explained me and all and with the on my second pregnancy also, I had a fear I don’t want my child to get infected with this thing. I had a fear, I had really a bad fear of this thing. I was, I have booked an appointment to abort my child also.

So, I told the HIV team, you know, regarding my fear and everything, why I wanted to abort it. I told them everything regarding that thing and they explained to me, you know, “It’s completely normal and you don’t have to face anything. You’re taking medication and it won’t, probably like 99 per cent it won’t affect your child. Only 1 per cent of the children you know, they get affected with this thing.” But, you know, my fear was like it I don’t want that thing to haunt me, you know, always in my mind. So that’s the thing why I was going to abort my child, but then they have explained me, you know, I just went with the flow, you know.

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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.

I think the fact that it happened on the same day like, it was like I believe in God like I am a Muslim woman. I have a strong faith in God. So, the fact that He hit me with bad news and then somehow, okay here’s something for you to hold onto or something to live for, kind of thing or like, you know, be positive for. I feel like yeah, my pregnancy is a positive thing and not like oh I’m burdened with a pregnancy now. Look now I’m happy again. I mean I’m still pregnant.

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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.

So, when I first got married, which was in 2017, I hadn’t really thought about children because I wasn’t on treatment this was not possible, well it would endanger the child so that was not an option for me. So, I waited like to see what to do. I had not started the treatment until 2019. So being a mother was kind of not an option for me. But once I started the treatment then I told the doctors that I had, I wanna get pregnant as soon as I can. That that was my goal.

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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.

Yes, it’s been very difficult I was diagnosed with severe nausea and vomiting, somewhere towards the end of the first trimester I was put on like any and every anti-nausea medication that there was. It’s definitely improved in the last like six weeks, but it was a very psychologically, physically trying four months, I think women, women for whatever reason, I’m a very well-educated woman who had no idea that one in three percent of the population while pregnant can become like horrifically sick so we obviously have some messaging issues around pregnancy that they only wanna talk about the more positive aspects of it. But other than that, which obviously was like a big thing it’s been, you know, she’s healthy so that’s, that’s great like it’s mostly me she’s a very efficient parasite and I am probably the nutritionally deprived one but that’s okay [laughs].

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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).

I would have been in my 30’s so I, starting a family would have been on my mind so I asked to be transferred to a female HIV doctor, so yeah, I think definitely a conversation about babies happened. Yeah, all the correspondence from them was really positive and really supportive and, oh, what I really liked about them as well was if I asked a question, one that was really scientific or they really would try and share the science with me and not just kind of dumb it down, I quite liked that. So yeah, so I’d ask a simple question like, “Am I gonna be able to have a HIV free baby?”

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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.

This is something that I’m worried about in within my household because I think, I live with my mother. I think outside of my household, I should be fine. Just living with my mother, I know she’s breastfed, you know. Just living with her, it’s going to be a bit annoying. I just want to get out and kind of move on because she, I think she will try to, like she will actually tell me, “Just try, just try.” Or like I knows there’s excuses again because I think it’s more like nipples being cracked or something, I dunno you know, the way the liquid comes out but there are reasons I can tell people, but my mother will kind of, if she sees me especially I’ll be living with her 24/7 I know she’s going to be looking after, helping me look after my child, she might be like, “Oh just try.” Or like, “I’m here, don’t worry, just try.” She will try and support me and it’ll be a sweet thing for her to try but I will get that pressure from just my mother I think. I think no one else. My mother-in-law, she might be coming to this country like to see the baby so that’s going to be another pressure. Yeah, my mother-in-law is really old school but yeah, so there will be pressure from my mother and my mother-in-law but no one else.

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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.

Just being sick all the time dealing with like a very traumatic situation and like an interpersonal situation like depression and having a positive outlook has been difficult for me. And I figure it would be difficult for anyone in this position, like I’m not holding like it would be impossible for me to be like I’m a really perfectly cheery person who’s not having, like I’m having like strong fears about post-partum, like this process has just been so hard for me. And the last thing and the thing that I’m most scared of is that after doing this full process for nine months I am going to have an infant that doesn’t feel like mine. And like depression during pregnancy is, can be quite correlative to risk of post-partum and breastfeeding is one mechanism, it’s not the only one but breastfeeding does reduce risk of post-partum and I am much more concerned about the risk and the impact of post-partum and if I have post-partum and I feel like this child that I like fought to have and like, you know, went through a very difficult pregnancy for like if for the first year she doesn’t even feel like mine. I feel like I’m just ghosting my own body. I am so much more worried about the impact that would have on her.

I’m just much more worried about the impact that would have on her versus the very, very, very, very miniscule risk that is transmission.

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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.

Being diagnosed with HIV

Most of the women we spoke with had been diagnosed some years before their most recent pregnancy. Some had been diagnosed a long time ago,...