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 Some aspects of previous recommendations can become out of date, and therefore it is always advisable to look up the most up-date guidelines and recommendations.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.

Just, you know, making, you know, in advance to feed the baby it was just easier to feed him on the street out and about yeah in front of other people.

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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).

I wanted to protect my baby I felt the stage, once you’re undetectable is a small chance that you can pass it on, but for me I decide I don’t want to, I don’t want to take any risks, that’s why I went for bottle.

I have got my sister-law who is positive so when I talk to her she’s the one who told me that over there they can breastfeed [for the first three months] and the people that she knows they are all okay, I mean the children, they’re okay after being breastfed but I said I went to the, I don’t know how it works, I mean it might be working for the people and it might not work for others.

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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.

But a lot of people say that has a lot of pros to it in terms of like the father can connect with the baby also, in terms of like we can share, we can share the shift. Like the morning shift, the night shift. Because like a lot of mums have said like when they’re breastfeeding, it’s kind of just all on them because obviously the fathers can’t do anything. In terms of like especially like night feed. If they’re not expressing it through a bottle or in a formula they’ve not got to that stage yet. It’s only the mum that can do it whereas I was able to share that load in. My baby really connected with dad, because he had to do a lot. He had to do a lot of hands on the first few months because like I said I was just recovering.

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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.

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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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.

Oh, everything is fine, he’s been well. The bonding is there he’s, he’s eating well. It’s okay but I think the first, for my first son and this, this with the new baby the connection and the bonding is so strong for the second one I don’t know what happened but for this one is okay.

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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.

It was, I didn’t have any problem. It was, it was really good and I’m happy with it even before I could choose that I didn’t know about my situation I always felt that the formula was a not a problem for me if I had to use so I haven’t had any problem because that time.

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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.

I think for some reason that transition has really sort of worked out. She appears to sort of when I first, when I first introduced her to the bottle, she didn’t want it so that was, I sort of felt, ‘oh if she now refuses the bottle what do I do?’ you know, but then with persistence she started to take the bottle and then when I change the formula as well because she was already on the breastmilk in the bottle, she accepted it straight away. I don’t know if she knew the difference, but she took it and also now that I’ve introduced food, I started with pureed, she seemed to take it okay.

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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.

To be honest like I went through a phase where I hated it, because I wake up in the mornin- at night and he, you know like you feel like when you’re breastfeeding you just take your baby and put them in your boobs and you don’t feel the pressure of having to. Because you’re holding a bottle, and you’re tired, you, for me I hated it in the first few months because of that reason. Because at night you couldn’t just have like a night where because with bottle feed you have to be careful. Are they choking? And afterwards you have to, what do you call it? Burp them. Not sure if you breastfeed you burp. But you have to burp them and things like that and it was you know, I hated it.

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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).

It’s a very natural thing to just want to feed the baby and obviously in the African community you need to breastfeed so it was preparing myself for the questions of “why aren’t you breastfeeding”, “why are you formula feeding”, and having a story ready that was my big like thing of having a story to just shut everybody up and leave me alone kind of thing because obviously we’re not gonna be talking about the diagnosis with the family and stuff like that. I remember the build up to having the baby I was panicking about those questions, and they do like to question you a lot yeah.

Regardless of my feelings of wanting to breast feed I, I couldn’t outweigh that risk potentially to her. It was kind of a non-decision really it’s just one that’s kind of automatically, obviously if I was in a position where I was in the country where I didn’t have access to clean things and I couldn’t formula feed safely that’s a different conversation but I, yeah I didn’t feel like it was a choice, it was like just wrap your head around it and get on with it kind of thing.

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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.

People have asked am I breastfeeding and I just said that unfortunately because they were so early I didn’t get any milk but, you know, that, that played on my mind a lot actually how to tell people why I wasn’t feeding or pumping or, you know doing it, so I think having the excuse of them being early has helped in a way and you know, just, just to use that as a sort of reason why I haven’t breastfed. But no-one has, no-one has kind of asked twice, you know or been sort of pushy about it, so that’s been nice.

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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.

I’ve not had any actual comments or people kind of asking why I’m formula feeding or yeah or questioning it really. wouldn’t say though that I haven’t felt like not under pressure but I think there is a kind of pressure out there for breastfeeding and I think that there is somebody that I met more recently who’s part of a massive breastfeeding network and promoting breastfeeding and she helps people with it and we were having a conversation and she knew because that I bottle fed baby and she wasn’t asking me or even saying anything, she was actually being more like “but it doesn’t work for everybody and that’s okay.” You could see that she was trying to be like, you know, “as much as I want people to do it and I try and help people to do it, I’m not judging people who are not doing it.”

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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.

Yeah, there was not enough people, there was no visitor, baby was not at home, he, baby was in the hospital for three weeks. He came home, coronavirus no visiting, no, no nobody can get close to the baby, so they don’t even know when I’m feeding him. They don’t know somebody was around it when I’m feeding him. When they grow on year and before starting, the family starting, meeting, friends start meeting and they don’t even know if I feed or not, if I bottle feed or if I because before one year he’s not even taking bottle anymore.

So, it didn’t even go there. Like I said, it’s how you, it’s how you prepare yourself, it’s how you move yourself, it’s how you, what you give people that’s what they believe. You don’t have to lie. It’s the way you go around things. Do you understand? Even though there was visitor in, I’m about to feed my baby, I come here “Five mins, I’ll be back.” You don’t know what I came to do.

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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.

There’s a way to go around it like I said. Go and feed your baby, want to go and feed your baby, you’re feeding it with bottle feed, you don’t say, ‘oh I don’t feed my baby when people are here, ‘oh give him breast’, ‘oh don’t worry he will take bottle’ and you know he’s taking bottle. He take water at that particular time, you know, if it’s something. It was only one of a friend that always came here, it was close to my house and said, “Oh my God I’ve never seen you breastfeed this baby,”’ and I said “Oh my God do you wanna see my breast?” It was just a joke, I say, “You wanna see my breast

or something? This is my breast.” I pulled down my breast. She was laughing and we just talk about it and that’s it and I even give it to baby, baby was so small then. I give it baby and baby didn’t want it, didn’t take it [laughs]. So, I said, “You see, I’m not selfish with him”, but he will just take it because I didn’t teach him, he wasn’t at home, he was in the hospital.

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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.

So, yeah it was like last time around, it was much more I would go and meet the support worker and collect the milk whether it be from the office itself or sometimes it would be from the clinic if we were kind of coincided at the time. And that was every four weeks or every month, you’d pick up four cartons of formula. This time around because of Covid, it’s not been as easy to do that and then obviously we went into lockdown at the end of last year so milk, she’s actually been getting it delivered to me this time around. I did meet up with her like two or three times kind of in the period just after baby was born and yeah I met up with her a couple of times at, at HIV clinic to hand it over but then since it’s just been getting posted out to me.

She did, now, now that I come to think of it. When I first went back, when I first met the support worker the first time around, she did ask me if I wanted to get involved with peer support stuff and do get involved with the charity work that they do but because my partner and I don’t, we’re not, we’re got very few people that know about our diagnosis, it’s like very close family and a couple of friends on each side. I decided not to just because yeah, not that you don’t know who you’re gonna meet but I also work in the voluntary sector so I’m much more likely to see people I know, so that was another reason I didn’t really get involved in the charity side of things as well so yeah.

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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).

It takes a while for the student finance stuff to sort itself out and then for Universal Credit to admit that I don’t have any funds for you until they got the notification. So I had no access to any money for about three or four months and we were nearly made homeless because obviously I couldn’t pay rent we couldn’t buy food we relied on charities for food, it was hard and obviously then trying to get ready for a baby plus then obviously getting her formula and, and things like that it, yeah it would have been beneficial to know that that was taken care of given that it wasn’t really my choice. It’s nice to know there are things out there like that but there’s just nothing around this area for any kind of support at all. I think it’s more in London which I’m outside of, so yeah, I think they should extend that a little bit.

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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.

I was never going to manage formula, I was not going to manage, if they said you pay, I think I was going to breastfeed them, I was going to take the risk but as they told me that it’s free that’s why I decided to give them the milk.

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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.

Oh, yes for, until the baby is a year so you can imagine what it would have been like without support, you know, if there was no support, I bet maybe most of us would stick to breastfeeding, you know.

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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.

Yeah sure so the boys unfortunately had really bad reflux since birth really probably because of their prematurity and so we not in the hospital, well I say hospital, when we came home we quickly transitioned from the premature formula onto an anti-reflux formula which is fairly costly at £14 a tub. So, we’ve just been buying it but our local, well my clinic offer, so they either offer a years’ worth of formula you know, bought by them or I think it was three months of donor breastmilk per baby. So the formula they have access to is a sort of standard formula so had the boys been able to tolerate that formula we would have got a years’ worth for both babies from them which is just incredible however because they’re on the anti-reflux formula and it’s so much more expensive even at cost price to them they managed to get us enough, I think it lasted a couple of months which, you know, is, it’s still a big chunk of money that they used to give us some formula. So that was, that was really nice and you know, as I said we just bought the rest.

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