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).

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).

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.

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.

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.

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.

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.

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.

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).

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.

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.

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).