Views about older guidelines and feeding experiences outside of the UK

This page explores how the women we spoke with felt about the 2020 British HIV Association (BHIVA) guidelines regarding infant feeding and HIV, including the Safer Triangle information, which shows that to safely breastfeed it’s important to have No virus (undetectable viral load), Happy tums (no diarrhoea or vomiting by baby or mother) and Healthy breasts for mums (no mastitis, cracked nipples or other nipple infection).

Please note: The UK BHIVA guidelines were updated in 2022 to clarify that mixed feeding with formula milk (baby receiving breastmilk and formula milk) is safe in certain situations and with the support of your HIV medical team. However, mixed feeding with solid food (baby receiving breastmilk and solid food) is not advised for babies under six months.

We now explore the following topics:

  • Recalling previous pregnancies and older guidelines
  • Applying the 2020 BHIVA guidelines to their most recent pregnancy or birth
  • Views about how 2020 BHIVA guidelines work in practice

We asked all the women we spoke with about the 2020 BHIVA guidelines, but not all were aware of them. A few women were quite familiar with the guidelines and had supplemented what the doctor had told them with their own additional research. Others had little knowledge about the guidelines, or even the actual risks of HIV transmission via breastmilk, but they recalled their clinicians’ advice that it was much safer to formula feed compared to breastfeeding.

Recalling previous pregnancies and older guidelines

Overall, women felt happy about the way in which things had progressed over time, such that now there was more conversation about their choices regarding infant feeding. This was especially the case for those with much older children, who could recall and compare their experiences now (most recent pregnancy) with earlier pregnancies. LeaSuwanna and Sasha recalled how frightening it had been in the past to go through pregnancy while living with HIV. Everything about pregnancy and birth was extremely controlled and medicalised. There was little or no discussion about infant feeding options or how they felt about not being able to breastfeed.

LeaSuwanna breastfed her first baby (now in his 20s) before her HIV diagnosis; she was heartbroken when she could not breastfeed her second child (now a teenager).

I breastfed my son and was all geared up to breastfeed my next child and they were like, “Er, no you’re not breastfeeding, we have no research on this. You cannot. You’ll end up giving your baby HIV.” There was a lot of negative advice so they said, “Look you can’t do it.” I could have a natural birth, but I couldn’t breastfeed and they gave me the statistics on the natural versus caesarean. I could choose both, whichever. But my mum was like, “Have a caesarean it seems safer de de de.”  So I had the caesarean. I would never have a caesarean again, it’s horrible. I hate it.

And the breastfeeding, it broke my heart. I really wanted to breastfeed her. I didn’t think I was gonna bond. They said, “Well we’ll give you a pill as soon as the baby’s born that will soak up the milk, so you won’t have that as an issue when they cry and everything else.” It didn’t work on me. I had to take it like three times. Then every time she cried, I had like these patches, so that made it even worse. For a little while I was like, ‘oh I might as well just do it’ but I didn’t, I never, it was, because it made me think that I could end up killing my child, so I didn’t.

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Accumulating evidence on the safety of vaginal delivery among women living with HIV whose viral load was suppressed resulted in major shifts in the guidelines for pregnancy and birth choices. This made it possible for women and birthing parents living with HIV to have vaginal deliveries with confidence that there was no risk of HIV transmission to the baby. Being able to breastfeed was seen by several women as the final remaining challenge, and it was heartening for them to see it starting to open up as a possibility.

We also spoke to two fathers about their thoughts of infant feeding. Stephan’s partner Holly is pregnant with their first child. Edward’s wife Marella is pregnant with their second child. They formula fed their first child but are planning to breastfeed their next one.

Edward and his wife, Marella, have decided to breastfeed their second child, after formula feeding their first, because they are more confident about the low risk this time round (played by an actor).

I was shocked at the difference in the information that was being provided and it just, it for me flipped it, it flipped everything on its head because the decision was so quick last time, you know you almost thought well it worked last time can we just, you know, stick with the same process and now we had to make a, a decision, you know, completely against what we did the first time round. So I like a winning formula and the first time was good and we think, you know, why change it. But it’s, yeah, I think once I got like to grips with the information that was being provided and started to look into it and knew, you know, the risks that are still involved, however, you know, the ways of preventing them were, they were clearer and yeah I think it’s very different this time round.

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Applying the 2020 BHIVA guidelines to their most recent pregnancy or birth

The guidelines have supported breastfeeding as an option since 2018, and this was a huge relief for those women who had always felt a deep desire to breastfeed their baby. LeaSuwanna (mentioned above), now pregnant with her third child, was fully primed to breastfeed this time, having missed it with her middle child.

Unfortunately, Amy, Swelihle and Marcy (all with babies a few months old) only learned about the BHIVA Infant feeding guidelines – and that they could have breastfed – when we spoke with them, and expressed sadness about this. They felt they might have tried breastfeeding if they had known.

Marcy was not told about the BHIVA guidelines and that she had an option to breastfeed – she feels she would have tried it if she had known.

If I had known that for this my baby, this one that’s one month now, maybe when my doctor asked me, “What are my options?” if he had explained that recently they’ve updated [the guidelines] and he had given me this information I would have gone straight to breast-, breastfeeding and maybe I would ask him, I would have asked him that same question of that has been on my mind since that made me go for bottle feeding. So, because I didn’t get this information I was just going, “Oh bottle feed.”

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From talking to different women, we found that they felt differently about infant feeding decisions and the 2020 BHIVA guidelines, depending on their circumstances at the time. Marella explained that although the guidelines had been the same when she was pregnant before (child now aged 2), as a “paranoid” first time mum, she had felt unprepared to take on any risk. This time however, she had talked at length with her doctors and her husband Edward, and read the latest evidence so she felt much more confident and was looking forward to breastfeeding.

Marella had reviewed the same BHIVA guidelines, in 2018, when she was pregnant with her 2-year old but had decided against breastfeeding. She feels differently now.

I think I remember my doctor sort of asking if I’d thought about it. And I was very much like no, not doing it, no way. I think I was, I was probably more headstrong and I just wasn’t, I wasn’t even considering it because, for me, at that time,  the thought and the risk of transmission like outweighed any sort of desire I had and I was already like, you know, paranoid first mum and I didn’t really know what I was doing. Didn’t know how this would be and I was quite like okay with that decision.

Now obviously I’m pregnant again and I think guidelines, how I previously read the guidelines as to when I read them now, I didn’t—I think I am probably reading the same guidelines and there’s more behind it. My opinion has changed now. Whereas obviously before I was dead like certain that I would not now I’m actually considering it like quite shocking my change in mind-set considering it for this baby that I’m pregnant with. So and that’s been a two year yeah, two year gap.

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How long women had been living with their own diagnosis also affected how they felt about infant feeding. For example, Emily only got her HIV diagnosis during her most recent pregnancy, and although her doctors told her about her options, she “did not want to hear” too much about the infant feeding guidelines.

Emily did not wish to engage with the infant feeding guidelines too much because her own HIV diagnosis was still too fresh in her mind.

I would say that like, my first it was because when you are HIV, when you are living with HIV already before you get pregnant, I think one is different because you are in it already and then you, you probably know a lot about it so that one is different like compared to my case, I wasn’t, I didn’t know I was having, I have it, HIV. So I only got to know when I was pregnant so it was like a, I didn’t know much. I thought to me the best thing to do is not breastfeed my baby because I know that will be the safest but if like I was living with this already before I getting pregnant, I would have known that I, it was actually very good. They did explain to me but it’s like I didn’t want to hear. Yeah, they did explain but if I was like in it already that would have been different.

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There were many other reasons why several women still felt safer formula feeding their babies, despite the increased options available. Sinead had formula fed her most recent baby and had not known about the 2020 BHIVA guidelines on infant feeding until we spoke with her. However, she told us that even if she had, she would have still used formula. This was because, similar to a few other women we spoke with, she did not like the thought of monthly blood tests for her baby. In addition, similar to Sherry (below), she had older children whom she had breastfed only for a short period of time because she did not like breastfeeding. Others such as Stephanie and Holly had been formula fed as babies. Their experiences of formula feeding reinforced their belief that you did not need to breastfeed to raise healthy, well-bonded babies.

Sinead found out about the BHIVA guidelines after she had given birth to her second child. She is pleased breastfeeding as an option, but it would not have affected her decision to formula feed her second baby.

I think that’s a really good thing that people are being encouraged to do it if they can. I don’t think it would have impacted our decision if I had known that. I don’t think it would have impacted the decision having done it once the way that we did it and felt that that was safe and it was good. But yeah I do think it’s good that it’s an encouragement for new mums. I think if there’s more and more research and support to show the risks involved or the lack of risk involved I think that’s the thing I kind of needed kind of more reassurance for me to go down that route. But yeah, I think it’s definitely a good thing.

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Danai and Tina gave birth to twins and had to consider the practicalities of trying to breastfeed two infants. Tina also felt that the current evidence (and BHIVA infant feeding guidelines) did not fully apply to them because her babies were premature.

Tina had twins, and they were premature, so she did not feel able to breastfeed, but she’s pleased that the guidelines gave mothers more choice.

Views about how 2020 BHIVA guidelines work in practice

Among the women who were well informed about the 2020 BHIVA guidelines regarding infant feeding and HIV, there was some unease about particular issues. Women such as Lana, Puleng, Kay and Christine felt that the information was confusing and not very relatable. They also felt it placed an immense amount of pressure and responsibility on women and birthing parents living with HIV.

Pregnant at the time, Kay shared the heavy burden of responsibility carried by mothers with HIV to not pass HIV to their infants.

I am just worried that like, well I get scared that, you know, there will be the one case where like the undetectable mother passes the virus on to her new born infant and then what ends up happening is that every mother regardless of how negligible that risk is will then internalise the fact that like this choice could still somehow lead to that because we just don’t have the mountains of data that would make me feel like that I can still make a moral choice when it comes to like sexual activity versus breast. And I know that like I think from many, many mothers they would hold themselves to like such a high, like I feel like they’d be punishing themselves for the rest of their life if that happened, you know, so yeah…But I still think the policy is good I just think that it’s harder for mothers and to like collect this data because it, it does feel like there is just, the stakes are really high and so if there is even one case that flips by, you know, that could have like a really big psychological impact on the women as well.

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Some women were confused about the guidelines and what it means to ‘exclusively breastfeed’. In 2022, the UK guidelines were updated to confirm that using formula milk while breastfeeding is safe under certain circumstances and with the support of a medical team. However, it is not safe to feed a baby solids while breastfeeding. Holly still wanted clarity about mixed feeding and planned to talk to her doctor about the practicalities of it.

Kay felt the BHIVA guidelines are not human centred and put mothers living with HIV under a lot of pressure.

In my opinion, the current triangle policy is not human-centered. To expect that HIV-positive moms – who are already under a great degree of pressure and scrutiny to ensure they do not pass the virus during pregnancy – exclusively breastfeed for 6 months without cracked nipples, mastitis, gastrointestinal issues for either mother or baby, supply failure, or other host of potential roadblocks for a reduction in risk that can't really be quantified and could be negligible, is not an ideal policy response. It piles on the mother, and only accounts for the costs of breastfeeding via transmission risks, without also factoring in benefits from a mental health or bonding, immunity, or financial standpoint. To give some last-mile perspective, according to the specialist in my hospital, of the 20 HIV positive mothers who have attempted to breastfeed, only 2 (or 10 percent) were able to get to the six month goal post with exclusive feeding. The guidelines as they currently stand do not really empower HIV positive women, they guilt and suffocate them.

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Maria did not know the guidelines advise breastfeeding up to six months, as her first HIV doctor supported her to breastfeed beyond 6 months and told her to “stand her ground” when she was questioned by her paediatrician.

All the evidence that currently exists on the risk of HIV transmission via breastmilk comes from research conducted in African and Asian countries. There are no studies to date that are based on women and birthing parents with HIV in high income countries, where access to HIV medication and viral load testing may be more readily available. This is one of the reasons why the UK guidelines favour formula feeding. A few women felt that the reasons for this position were not entirely clear to them. For example, women who traced their heritage to other parts of the world were aware of the different advice issued by the World Health Organisation in African and Asian countries, where women with HIV are encouraged to breastfeed exclusively and not use formula milk. They had questioned their HIV clinicians about these divergent guidelines between the UK and other countries but felt unsatisfied with the responses they received.

Puleng felt the UK BHIVA guidelines seemed to be based more around the availability of clean water (to mix formula milk), than the actual risk of transmission via breastmilk (played by an actor).

Although, the rationale was that in Africa there’s less cleaner waters so it’s much more safer to breastfeed than to bottle feed. So, I was like, “is it because of water or is it because the risks of transmission is low anyway?” so I was like, “Can I not still, even though there’s no risk of, you know, even though there’s clean water available-?”

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Like Puleng, Lana also felt that the UK guidelines were based mostly on socio-economic factors rather than biological and physiological factors.

Lana asked questions about the guidelines but got few answers. Pregnant at the time, Lana felt like her HIV clinicians judged her as incapable of understanding research because she is Black.

I said, “So, why are them examples so concerned of the social aspects?’ What about the physiological aspect of it? Why are they so narrowed down? Why is not being talked about?’ And that’s the few questions I’ve asked them and clearly no-one, no-one at all has answers because I even asked one of the doctors, “Even this breastmilk can be analysed in the laboratory. Do we have any laboratory studies?” Just like we analyse blood samples that analyse human milk from affected mothers, even mothers who have high viral load are compared with women who have low viral, undetectable viral load. What’s the difference?” and the doctor said, Oh he hasn’t researched to see if there are laboratory studies done, and I was like, ‘okay so the information you provided where did it coming from?’

They said, “It was guideline.” I was like, “What is the guideline based on? What informs the guideline?”

And what answers did you get?

They didn’t give me answer, you know, I think like I said maybe because I’m a black person they don’t understand that I have research understanding, I have understanding of how some of these things work. Most policies are informed by research and research can be outdated after some time when we have new knowledge and if there is no new knowledge you know you’re interpreting the old knowledge with caution. Maybe something may have changed so when I ask them questions, they treat it like, “Oh she doesn’t have enough knowledge, or she may not understand.”

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If a person with HIV is taking their medication and has an undetectable viral load – meaning the virus is controlled – they cannot pass on HIV through sex. This is known as “U=U” meaning “Undetectable equals Untransmittable.” In this context, HIV cannot be passed on during sex, even when a condom is not used. Recent studies have found zero cases of HIV transmission through sex when a person has an undetectable viral load.  A few women we spoke with felt frustrated about why this did not also apply to breastfeeding.

Nozipho feels it doesn’t make sense that having unprotected sex with someone is considered less risky for HIV transmission than breastfeeding a baby.

I’d made up my mind because I knew the chances. Because I’m feeling like if you telling me that you can have sex with someone and they do not get HIV, how is that different from breastfeeding your child? Because I feel like that part it’s more riskier than the child breastfeeding from the breast. I don’t know maybe, I could be wrong because they, it’s like they are both the same to me so we can’t just sit here and say okay you can’t get it from having sex but you can get, the child can get it from you. Like I don’t know if it makes sense to me.

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Given the lack of concrete data about HIV risk from breastfeeding, Holly could see how UK doctors might feel the need to “play it safe.” And when their clinicians and their country’s national guidelines were giving a particular set of advice, even if they knew of alternative approaches, women felt safer aligning themselves with how things were done where they lived.

Holly feels that clinicians might feel obliged to encourage formula feeding over breastfeeding (played by an actor).

I think all the initial advice was kind of what doctors are required to do, just play ultimate safe, all of them were like, you know, “you shouldn’t, but you can.” They were like, you know, yeah so really like, “it’s really advised that you don’t and it, and they still say that they really advise that you don’t, but you can if you want”. And again someone with HIV who was all perfect and pure once upon a time it’s really lovely to hear that you can if you want. And just that kind of support that is offered and encouragement and positivity, you know, the baby, I feel like the doctor’s obliged to say “no, no, no, no you really probably shouldn’t” because that’s part of probably just the NHS isn’t it, they’ve always got to advise the better course of health or action or something like that.

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