Experiences of breastfeeding (while living with HIV)

This section explores women’s experiences of breastfeeding their babies. In the UK, according to the British HIV Association (BHIVA) guidelines, while women and birthing parents living with HIV are recommended to formula feed their babies, those who choose to breastfeed can be supported to do so in a way that minimises risk of HIV transmission.

In this section, we cover the following:

  • Feelings towards breastfeeding
  • Following the BHIVA safe breastfeeding guidelines
  • Deciding when to stop breastfeeding

Feelings towards breastfeeding

For the mothers we spoke to who were breastfeeding (or planned to, if pregnant), it was mostly a very positive experience. See Choosing between breastfeeding and formula feeding to learn how women made their decision. Women such as Maria and Puleng believed that breastfeeding helped them bond with their baby better. For first time breastfeeders, working out the right positions to hold the baby for a good ‘latch’ took a bit of practice, but they got there in the end.

Puleng found that breastfeeding helped her connect quickly with her baby.

Those who chose to breastfeed also enjoyed feeling that they were supporting their baby’s health through the nutrients in breastmilk. The convenience of breastfeeding was also important to several of the women we spoke with. They discussed how breastfeeding did not need preparation or equipment, and saw this as a significant benefit. Eriife found that breastfeeding was even more convenient than she had expected, because the Covid-19 pandemic meant she didn’t need to feed in public.

Marella had formula fed her older child, but planned to breastfeed this time. She appreciated that breastfeeding was cheap, nutritious, and convenient.

Of course, every experience is unique and breastfeeding helped some women to bond with their babies and they enjoyed doing it. Others, such as Biola, found breastfeeding stressful and they worried about keeping their baby healthy. The BHIVA guidelines state that a baby should not be given food while they are breastfeeding. Biola has not shared her HIV status with anyone, including her partner, so she worried that other people might feed her baby other food, not knowing that her baby was meant to be exclusively breastfed.

Biola worried about her baby contracting HIV and it made breastfeeding stressful.

Gracelove and other mothers with older children sometimes found it difficult to manage breastfeeding along with daily childcare. New babies are demanding, and Eriife remarked about how it was not always easy to ensure she herself had eaten something before it was time to breastfeed.

Eriife struggled with new mother issues like getting enough to eat and sleep.

Following the BHIVA Safer Breastfeeding Guidelines

At the time of this project, mothers with HIV were advised to follow BHIVA’s The Safer Triangle guidelines for breastfeeding. These guidelines outline that in order to breastfeed, the mother’s HIV viral load should be undetectable, her breasts should be healthy (with no cracked nipples, mastitis or thrush), and the baby should not be having any digestive issues (diarrhoea or vomiting). When one of these occurs, it is recommended to stop breastfeeding and begin using formula. Gracelove’s doctor suggested she express breastmilk in case she was ever unwell, so she could give her baby breastmilk through a bottle and resume breastfeeding (via the nipple) when she was well again. Once the baby reaches six months, mothers are advised to stop breastfeeding to avoid additional risk of HIV transmission.

All new mothers with HIV need to be advised by an HIV-specialist clinician about infant feeding options according to the BHIVA guidelines, and if they decide to breastfeed they should be offered support with following them. As described in ‘Conversations with HIV clinicians about infant feeding and HIV’, at times, this information and support was difficult to access. From women’s accounts to us, some healthcare practitioners were under-informed and gave incomplete or conflicting advice.

Further, new mothers may interact with a range of healthcare professionals, some of whom may be less aware of the most up-date information from BHIVA regarding infant feeding. 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. This information was not available to Camille, who struggled with non-HIV specialist nurses not knowing how to help her when her baby was born with jaundice. The lack of support meant she gave up breastfeeding after a day as she was told she didn’t have enough milk. Her milk came the next day but it was too late and she still feels sad about it.

Camille did not have adequate breastfeeding support when her baby was born with jaundice, and the restriction on mixed feeding forced her to switch to formula.

In contrast, with the right support, Maria successfully breastfed her baby. She preferred to see her HIV clinic doctor rather than her baby’s paediatrician because her HIV doctor was encouraging and told her to “stand your ground,” while she felt the paediatrician exaggerated the risk of HIV transmission, with little consideration of her wish to breastfeed.

Mothers often found it difficult to balance the challenges of learning to breastfeed with the general exhaustion and physical trauma of having a newborn baby. Breastfeeding requires a high quantity of milk production, and healthcare staff may express an urgency or concern about bringing or keeping up the baby’s weight. This can be a scary time for new mothers, who want more than anything to give their babies the best start in life.

Eriife had successfully breastfed her older child while living with HIV, so when she had her second baby, she felt confident to manage it again. However, when first-time mother Rachel’s baby was hospitalised for a health problem, she was told she was not expressing enough milk and therefore would need to switch to donor milk. Rachel felt “disappointed in herself” that she “put her (baby) through this” as she had longed to breastfeed and felt a deep loss when she would see other mothers bringing their own expressed milk for their babies in hospital.

**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.**

Rachel’s baby had donor breast milk in the hospital but didn’t tolerate it well so was put on formula. She felt it was her fault that she couldn’t breastfeed.

Deborah, who breastfed for two months, felt frustrated when her healthcare providers made her feel like breastfeeding was the wrong choice despite the BHIVA guidelines stating that a mother in her position should be supported to breastfeed. Among the women who were still pregnant at the time we spoke with them, a few, such as Kay, expressed concern about the rigid nature of the guidelines.

Deborah felt like doctors didn’t want her to breastfeed even though she was following their instructions (played by an actor).

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

Having regular blood testing was helpful to some mothers we spoke to as it gave them peace of mind. While it was a valued part of knowing their babies were safe, mothers like Gracelove and Puleng found it difficult to see their children having blood tests. Puleng describes it as “a bit heart-breaking” to watch. Eriife found that her baby seemed especially upset by blood tests (compared to her older child who was taken to blood tests by her husband), so she considered stopping breastfeeding earlier than six months.

Eriife found that unlike her first baby, her second baby found the blood tests troubling.

Deciding when to stop breastfeeding

Current UK guidelines advise breastfeeding for up to six months if you have HIV. Breastfeeding mothers with HIV are advised to switch to formula or solid food at around six months or if they or their baby are sick or if they have cracked nipples or mastitis.

Some mothers stopped breastfeeding once their health or their baby’s health fell outside of the guidelines. For example, Stephanie stopped breastfeeding after a few days when she got cracked nipples. Although she had planned to breastfeed for a month, she was prepared to stop if things did not work out. On the other hand, Camille (see above) felt very emotional about having to give up breastfeeding after a day, especially when her breasts were full of milk.

Stephanie had planned to breastfeed for a month but stopped after a few days due to cracked nipples.

For the mums who breastfed for several months, stopping breastfeeding was often an emotional process. Stopping was accompanied by a sense of finality because babies were no longer allowed to breastfeed once formula or solid food was introduced. Puleng described breastfeeding as a “smooth ride,” which made it bittersweet to leave behind. In some cases, mothers stopped when their babies expressed interest in solid food. Gracelove decided to stop breastfeeding after four and a half months in order to avoid any risks associated with her having a Covid vaccine. She also felt that switching to solid food could have some benefits like her baby being fuller and sleeping longer.

Puleng had been diagnosed late during her previous pregnancy. She had a caesarean section delivery, and formula fed her baby. However, after this pregnancy she had the chance to breastfeed (played by an actor).

One mother, Maria, had continued to breastfeed beyond the recommended six months with the support of her HIV doctor. However, when her new HIV doctor realised that she had continued to breastfeed beyond six months, they questioned her about this and made her panic that she may have caused harm to her baby. Discrepancies in the advice women received from different doctors was a theme that resonated across other women’s experiences as well.

Maria was supported to breastfeed beyond the advised period by her first doctor but panicked when she got a phone call from her new HIV doctor.