Experiences of formula feeding while living with HIV

Many of the mothers we spoke with had formula fed their babies. This was usually because they wanted to remove all risk of HIV for their babies, and the most recent UK BHIVA (British HIV Association) guidelines on infant feeding and HIV recommend formula feeding as the safest option. However, there were many different factors that women thought about during this process of decision-making and subsequently formula feeding their babies.

This section describes women’s experiences of obtaining and using formula milk to feed their babies. We cover the following topics:

  • Practicalities of formula feeding
  • Emotions while formula feeding
  • Where to get formula milk
  • Financial costs of formula feeding

Please note that the BHIVA guidelines on pregnancy and infant feeding with HIV are updated regularly, based on the latest available research. Some aspects of previous recommendations can become out of date, and therefore it is always advisable to look up the most up-date guidelines and recommendations.

Practicalities of formula feeding

The women we spoke with shared a wide range of experiences of formula feeding; the decision to formula feed was easier for some than others. Sandra had always planned to use formula as she found it convenient and easier to manage in public. Fatima wanted to formula feed to remove all risk of HIV transmission. Other women had not been sure during their pregnancies but decided to formula feed around the time they gave birth.

Sandra found formula feeding practical and thought it was easier than if she had breastfed.

April was diagnosed during her most recent pregnancy, and although she had breastfed her two older children, she decided she would formula feed her third baby to remove all risk from HIV. Women with African or Asian heritage or family sometimes discussed how the conversations around infant feeding and HIV were quite different in the UK versus ‘back home.’ In particular, in African and Asian countries, new mothers with HIV are advised to breastfeed (World Health Organisation 2016), which is in contrast to the advice given in the UK. A few women, like Layla, commented on having to make sense of these seemingly contradictory messages, as she knew mothers with HIV were advised to breastfeed in her country of origin. Layla had considered breastfeeding but decided to formula feed both her babies.

April discussed her decision to formula feed her youngest baby, even though her sister-law in Tanzania is HIV positive and breastfeeding (played by an actor).

Beyond concerns about HIV transmission, Maya spoke about a wide range of practical benefits when it came to formula feeding, such as an opportunity for partners to share responsibility and bond with the baby. That said, making up bottles and the extra planning that formula feeding requires can be a learning process for women (and/or their partners). New parenthood is exhausting and having to prepare formula feeds while also recovering from childbirth can be a struggle. For example, Danai found formula feeding her twins after having a caesarean delivery difficult and was grateful that her husband was able to help. Some women, like Emma, also recalled being helped by their medical team while they were on the maternity ward.

Formula feeding allowed Maya to share feeding duties with her partner, which was especially helpful while she was recovering from her delivery.

Maya’s baby took time to adjusting to formula milk. At one point she wondered if it had caused him health issues, such as eczema, but then he got better and put on “a good amount of weight.”

We also spoke to two fathers about their thoughts on infant feeding. Stephen’s partner, Holly, was pregnant with their first child and Edward’s partner, Marella, was pregnant with their second child (their older child was two years old). Both couples were considering breastfeeding their babies. In fact, Marella explained that she had not felt confident enough to consider breastfeeding their older child (the UK guidelines on infant feeding had been the same at the time) but she felt differently now.

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.

See more on fathers’ and partners’ experiences.

Emotions while formula feeding

There are many opinions about breastfeeding and formula feeding (see more detail in Choosing between breastfeeding and formula feeding) which can impact on women and birthing parents’ feelings about their feeding choices. The women we spoke with had a range of emotional reactions to formula feeding. A few women like Marcy wondered whether formula feeding would affect bonding with their babies. Rachel had wanted to breastfeed but had lactation issues so was advised not to, which was emotionally difficult for her. Maya was fine with formula feeding but found choosing formula milk difficult as her and her partner received mixed advice from loved ones about which brand was best.

Some women thought about how their feeding choices might have influenced how well they had bonded with their babies.

Marcy had three children. She breastfed her eldest child and formula fed the other two. She wondered if her feeding choices had any effect on how she had bonded with each of them.

We also heard from women that bonding was possible in many other ways, not just via breastfeeding. For example, cuddling and making skin-skin contact, as well as being responsive to babies’ needs and talking to them often helps babies feel safe and secure. Sinead and Sandra both formula fed their babies and felt they had no problems bonding with them.

During her pregnancy, Stephanie had decided to breastfeed for one month and formula feed after that. However, when the time came, she switched to formula feeding after a few days when she got cracked nipples. She felt okay about this, as she’d always known she would switch if there was a problem.

Stephanie had not issues with formula feeding and felt happy to do so.

Other women such as Gracelove also told us about their experience of transitioning from breastfeeding to formula feeding.

Gracelove breastfed her baby for four months and then switched to formula, which she found straightforward to do.

Being exhausted is common in new parenthood. Sterilising equipment, preparing feeds, and then bottle feeding the baby can be hard work. Negative attitudes towards formula feeding may be worse if women feel they were denied the opportunity to breastfed their baby. Nozipho had been planning to breastfeed, but confusion and miscommunication in the maternity ward led to her baby being formula fed (see Choosing between breastfeeding and formula feeding), she described the effort of having to sit upright and hold the bottle in a fixed position while feeding, which was especially difficult during the night.

Nozipho found formula feeding difficult, especially during night-time feeds.

People living with HIV sometimes wish to keep their diagnosis private or only share with a few trusted people. When a mother or birthing parent formula feeds their baby, it can raise suspicion about her health. This was a recurring concern among the women we spoke with. Amy and Tina both worried about their loved ones asking why they were formula feeding and had prepared their responses. For example, Tina would tell them it was because her twins were born early. Even Sasha, who is open about her HIV status, felt frustrated by people at her mum-and-baby groups who were asking her why she wasn’t 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).

Tina was asked why she was not breastfeeding, and not many people knew about her HIV status. She told them it is because her twins were born premature.

Some women felt less pressure to explain their feeding choices. Women had different views about breastfeeding and how others might respond, based on cultural heritage and the social expectations. Sinead is White and never felt any pressure to explain her choices but wondered if people judged her. In contrast to several other women of Black African ethnicity, Maya said she was not worried about being judged or that formula feeding would raise suspicions within her community. Amina, a South Asian woman who was pregnant, described a cultural expectation to breastfeed. However, she believed there was a generational difference, and young mothers these days were less likely to draw attention if they formula fed their babies.

Sinead wondered what the people around her thought about her not breastfeeding, but never felt pressured.

All the women we interviewed were pregnant or had given birth during the Covid-19 pandemic between April 2021 and January 2022. Some women gave birth when national lockdowns were in place. This meant they had no visitors, which relieved some of the pressures to explain why they were formula feeding. Some had told their loved ones that they had been breastfeeding before but had since weaned their babies onto formula.

Sherry gave birth during the 2020 Covid pandemic lockdown so she did not have many visitors who might ask her why she wasn’t breastfeeding.

Women who formula fed their babies also came up with some strategies to respond to questions about their choices. Some of the women’s medical teams gave them tips. Joyce told a couple of people that pregnancy affected her body in a way that prevented breastfeeding. When Camille’s friend commented that she had never seen her breastfeed, a mutual friend, who knows Camille’s HIV status, pretended that she had seen Camille breastfeed to prevent suspicion.

Sherry disliked breastfeeding and had formula fed her older children. She formula fed her youngest child as well, and had strategies explain why she did not breastfeed.

Where to get formula milk

In some areas there is free formula milk for families with HIV. However, access to this is inconsistent and it varies between clinics and regions, which can be confusing and frustrating. Medical staff, community midwives and health workers might be unaware or misinformed about how to access free formula milk and who is eligible for it.

An HIV charity gave Sinead formula milk for both her children. She found about this from her clinic. Emily got hers from her HIV clinic, but Amy was not offered any. A few women, like Diablos, were incorrectly told they could get free formula through a GP prescription, but when they went to their GP practice, they did not know of the scheme. Eventually Diablos got free formula from a local HIV clinic, having spent the first few weeks buying her own.

Sinead chose to formula feed both of her babies, and each time she received formula milk through a local HIV organisation.

Financial costs of formula feeding

Formula feeding comes with additional financial costs that breastfeeding does not have. Covering cost of formula milk, sterilising equipment and bottles can be difficult for some. Although some HIV clinics and charities in the UK provide free formula milk to mothers and families with HIV, it is not consistently available across the UK. This means that some women who formula fed their babies (or were planning to, if pregnant) had to find money for this themselves. Amy and her partner bought their own formula, which was a financial burden.

Amy was not offered free formula which was a struggle for her and her family (played by an actor).

However, others like Pauline, Veronica and Gracelove received support – either free formula milk or vouchers to cover the cost of formula feeding. For many of the women we spoke to, this support was vital in being able to feed their babies. In fact, a couple of women suggested they might have breastfed if they had not received this support.

Danai gave birth to twins and would have struggled to cover costs if she had not received free formula milk from her HIV organisation.

Gracelove had breastfed for four months and was thinking about shifting to formula feeding, in preparation for introducing her baby to solids. Her HIV doctor asked her about how she felt about formula feeding, and Gracelove told them she was worried about the costs, as she was on Universal Credit. The HIV clinic offered her free formula milk, which eased her financial worries.

If Joyce’s HIV clinic had not referred her to an HIV charity that gives her formula milk for free, thinks she would have stuck to breastfeeding.

In some situations, the support available may be insufficient, as for Tina, who needed a special, more expensive formula for her twins.

Tina’s twins were premature and needed a special type of formula milk. Because it costs more than standard formula, her clinic was only able to supply her with it for a few months.