On this page we cover the following:
- Considering the risk of HIV transmission
- Health benefits of breast milk
- Cultural expectations towards feeding
- Things not going as planned
- Preferring formula feeding
Over 800 pregnancies occur in women with HIV annually in the UK, with very low rates of passing HIV onto their babies (0.22%). Transmission risk via exclusive breastfeeding is greatly reduced by antiretroviral therapy (ARTs) but is not zero (see resources for more details.
The women we spoke to frequently described weighing up the risk of HIV transmission through breastfeeding with the health benefits of breastmilk. Please also read about women’s actual experiences of breastfeeding and formula feeding. Kay said that she wanted to breastfeed, but for others, like April, the risk of HIV transmission was too worrying. The one unifying theme for all women was that they wanted to do what is best for their baby.
Considering the risk of HIV transmission
The risk of transmitting HIV through breastfeeding is very low if you have an undetectable viral load (viral load less than 50). For mothers with detectable viral loads (more than 50), breastfeeding is usually strongly discouraged due to the increased risk of HIV transmission.
Among the women with spoke with, the decision to breastfeed or formula feed was often influenced by a combination of conversations they had had with their medical teams, their thoughts about risk and risk-taking in general, and their personal circumstances. They had received varied levels of advice and information from their medical teams, and it was not straightforward: some felt well informed by their HIV clinic while others did not; some felt supported by their midwives and paediatricians while others did not.
Women’s perceptions of the risk of passing HIV through breastmilk differed, and some recalled being told inaccurate or incomplete information by their medical team. For example, Sasha was told outdated information that the risk was 2% (2 HIV transmissions per 100 breastfeeding babies) and felt it was too “high a number” to even consider breastfeeding. The most up-to-date figure for HIV transmission via breastmilk for women on HIV treatment from before conception and all though pregnancy and delivery, with an undetectable viral load throughout, is less than one in a thousand (<1/1000) (PROMISE TRIAL, 2016).
Meanwhile, Sandra and Emily knew the risk of HIV transmission via breastmilk was very low but still wanted to formula feed to remove all risk entirely.
Emily spoke with her partner and family before making the decision.
Amina had been diagnosed during her pregnancy, just a few weeks before she spoke to us. She was worried that her viral load might change throughout the day without her knowing. In fact, she also did not believe it was possible to safely breastfeed (no matter what anybody said) and felt that by her having HIV “a line had been crossed.” She also felt reassured by seeing other babies in her family growing up healthy on formula milk.
Amina did not want to take the risk of transmitting HIV by breastfeeding and has seen healthy formula fed babies within her family.
Formula feeding was often seen as a way of being certain the baby wouldn’t contract HIV. This was especially felt by mothers who recalled the past when even having babies was a huge risk for women and birthing parents with HIV. Formula feeding allowed mothers like Sasha, who has three children, to feel she’d done “everything in her power” to make sure her babies “haven’t got it.” Others like Pauline worried that breastfeeding would be a source of ongoing anxiety about the possibility of transmission. Meanwhile, Maya’s choice to formula feed was informed by the trauma of having a sibling pass away from HIV-related complications and having a miscarriage before her pregnancy. For her and her partner, formula feeding was the preferred way to have a “very healthy baby in every shape, way, or form”.
Other mothers considered the transmission rate less concerning as long as their HIV remained undetectable. For example, Marella and Kay (pregnant at the time) planned to breastfeed because of the very low risk of transmission. Kay wanted to breastfeed because she had read that breastfeeding could help prevent post-partum depression. In her view, the impact of being emotionally detached from her baby would be more harmful than the “very miniscule” risk of transmission. Eriife had already breastfed her older child, and with the support of her HIV doctor, she felt confident breastfeeding again. She felt that if there was any risk to the baby, she would have formula fed.
Health benefits of breast milk
In the UK, outside of the context of HIV, breastfeeding is general encouraged by maternity teams. Among the mothers we spoke to, several, but not all, felt strongly that breast milk was the healthiest option for babies. The process of breastfeeding was also very highly valued as a way of bonding with a newborn. Several of the mothers we spoke with, such as Eriife and Gracelove, felt that breastmilk was a better option for babies’ nutrition, compared to formula milk.
Holly planned to breastfeed after seeing a relative’s baby put on weight quickly from breast milk.
Marella (pregnant at the time) reflected that her first child was often sick, and she wondered if this was related to being formula fed. A couple of mothers felt that they hadn’t bonded as closely to older children that they had formula fed, and that in the future they would prefer to breastfeed.
We also spoke with women who felt that formula feeding still produced healthy and robust babies. They often drew on themselves, their other children, or people they knew as examples of babies who were formula fed and grew up without any health issues.
Swelihle preferred to use formula to avoid waking up at night for feeds.
A few women who had formula fed also told us that it was possible to bond well with their baby, for example by having lots of skin-to-skin contact, cuddling, making eye contact, talking and singing.
When women felt very strongly that breast milk was the better option, if they were unable to breastfeed for some reason, such as Rachel and Camille, they felt very guilty and heartbroken. For both of them, their babies had some health problems and needed to stay in hospital. Both were told that they were not producing enough milk and advised by the hospital staff to give up breastfeeding. Camille felt she didn’t get the support she had needed.
Camille wanted to breastfeed to bond with her baby and provide the best possible nutrition.
We also spoke to two fathers about their thoughts on infant feeding. Stephan’s partner, Holly, is pregnant with their first child. Edward’s wife, Marella, is pregnant with their second child; they also have a two-year-old son. Both couples are considering breastfeeding.
Stephen, Holly’s partner, was interested in the benefits of breastfeeding for babies’ immune systems.
Kay found the logistics of breastfeeding easier when Covid-19 made it possible for her to work from home.
Cultural and familial expectations towards infant feeding
Many women we spoke to discussed how the norms within their families and cultures influenced their choice of feeding option. See also Experiences of formula feeding and Social Identity, belonging, stigma and discrimination. Amina, Emily and LeaSuwanna felt that breastfeeding was expected of them based on the emphasis on breastfeeding in their respective Asian, African and Caribbean cultures. Meanwhile, Diablos had grown up in an African country at a time when mothers with HIV were advised not to breastfeed, and this influenced her choice to use formula. Nowadays, the World Health Organisation recommends that all mothers taking HIV medication should breastfeed, especially in high HIV prevalence areas and where access to safe drinking water may not be possible. This differs from the BHIVA guidelines which are followed in the UK.
For Puleng, who has southern African heritage, breastfeeding “culturally is a big thing,” and not being able to breastfeed felt like missing out. This was also the case for Eriife, originally from east Africa.
Eriife grew up seeing mothers around her breastfeeding and considered it “something natural to do”.
For some women, the choice to formula feed was met with questions from their families or non-HIV medical staff. Emily and Amy found it stressful when family and friends, not aware of their HIV status, wanted to know why they were not breastfeeding.
Amy’s baby is of African heritage and suspected her partner’s family would ask her why she was not breastfeeding (played by an actor).
Nozipho and Biola’s partners were not aware of their HIV status. In fact, the reason why Biola chose to breastfeed was to avoid suspicion about her HIV status. A few women recalled their time in hospital, when healthcare staff who did not know their HIV status and/or decision to formula feed, questioned them about why they were not breastfeeding. Needing to repeatedly explain their situation was exhausting and upsetting.
Emma was sad not to breastfeed but decided she didn’t want to take any risks. She felt judged by staff who kept pressuring her about breastfeeding.
Although there may be different expectations across cultures, some women of African and Asian heritage felt that formula feeding was becoming more socially acceptable and common. This was especially true for the women in their 20s and early 30s.
Amina thinks formula feeding is becoming normal now and that women have a range of reasons not to breastfeed.
Things not going as planned
When Nozipho was experiencing problems with lactating, the medical team asked to give her baby formula. She agreed because she thought it was a “one off” and she would be able to breastfeed later. The 2020 BHIVA recommended exclusive breastfeeding, and so this initial mix-up meant that she no longer had the option to breastfeed.
Similarly, when Camille’s baby developed jaundice, her healthcare practitioners felt she did not have enough breastmilk supply and asked her to stop breastfeeding. She felt she wasn’t supported as she should have been and found it extra difficult when her breasts filled with milk shortly after her baby was started on formula milk.
The UK 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.
Tina had twins and they were premature, so she did not feel able to breastfeed but she’s pleased that the new guidelines give mothers more choice.
Preferring formula feeding
Women such as Danai and Maya commented that formula feeding allowed the sharing of feeding responsibilities with their partners. Sherry didn’t like breastfeeding and had only breastfed her older children for a short period of time, even though she was not HIV positive at that time. She did not mind that the UK guidelines encourage formula feeding and felt that being formula fed was “not gonna make any difference” to the baby and that breastfeeding wasn’t necessary for a baby to thrive.
Sherry did not breastfeed her three older children who are completely healthy and so the guidelines did not affect her decision to formula feed this time as well.
Most of the women we spoke to were offered free formula milk. Danai said she would have considered breastfeeding if she didn’t receive free formula milk. The thought of needing monthly blood tests for their baby also put some women off breastfeeding.
Maya and her partner did not worry about formula feeding.
Marella (currently pregnant) and her husband, Edward, formula fed their eldest child and planned to breastfeed this time.