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.

When I compare the two experiences, I was better, I don’t know how to put it, but I bonded better and quicker with my son than I did with my daughter.

Oh, I loved breastfeeding, I loved it. I loved every second of it. I did not find it difficult; I mean, at times it was demanding but I really, it, I just loved every second of it to be honest, you know, I did not find it challenging. I had enough breast milk supply at all times, you know, I loved it and my son loved it too.

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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.

I’d say it’s probably the best thing I’ve ever done. In terms of breastfeeding. I think, you know, in all of those meetings I had with all the team no-one sort of tells you it is a wonderful experience, it feels incredible sometimes being able to sort of provide your baby that nutrients and that food and no-one tells you that it’s actually more convenient than formula feeding. I never have to sort of prep bottles or worry if I’m late out, not late out, as in late back home I haven’t got enough bottles or formula milk. It’s a lot cheaper minus the amount of food I’m consuming because I’m always hungry. Yeah, no-one tells you how wonderful it feels at night when you can settle your baby within thirty seconds because, you know, you just have to whip out a breast and feed the baby and fall back asleep.

Yeah, I wish I’d done it with [older child’s name] but also, I know I wouldn’t have been I guess strong enough to advocate for myself with my first baby. Probably a bit sad but, yeah, I think I’ve been able to do that now and I feel quite proud of myself.

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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.

I would advise people not to breastfeed really.

Okay, why’s that?

Because it’s really stressful. You might be 100% sure that you’re taking your medica-, to me it was really stressful. I was living on stressful. I was living in pressure, you know, stressful. Because, even at my age, I knew I was taking my medication every day, yeah? I wasn’t feeding baby another food, even the water or anything. But it wasn’t easy. I did not have a clear mind you know, when I go for my tests. That day I won’t sleep. I don’t know other people how they have but to me I was just living that, this whole thing. Even though you know everything is perfect, but I had that question mark. If there’s one hundred percent sure that you know, HIV are just you know, I used to ask myself, where is the HIV in the body? Is it in the blood or, I don’t know, I wish you could speak my language I could explain a bit more better you know.

You live, honestly and you’ve got your baby to live in stress like that, and you’ve got other things again in your mind. It’s too much. I would advise if it’s really possible, I would advise people not to breastfeed. It’s not safe at all. You’re not to stay with a baby 24 hours to make sure that no one’s putting, even a tiny biscuit or, you know what I mean?

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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.

The only issues are with the way, the typical every other mother thinks, whether you have HIV or not, is when you’re tired and you haven’t eaten properly and, you know, you have to now quickly eat because you need breast and stuff like that. Those are the only, but those are not related to my condition, those are just new mother issue.

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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.

He had jaundice and the lack of awareness and the nurses who they obviously are not HIV trained background, they did not know how to support me. I did call there was a group there was a lady that gave me the number as well, they also deal with people with HIV and give support in terms of surrounding breastfeeding. I remember that evening I called them, but maybe they were out of office, if they could support me at that time I really, I didn’t want to do it

The first day I breastfed, it was good like I said I was really happy doing it and I was just caught unaware. The decision was just instant, “he needs this amount of fluid” you know, and my milk is not producing it like give me a chance, it didn’t make no difference though, for you to know that it wasn’t necessary because despite the formula milk it still didn’t get rid of the jaundice so I had to stay there again, so the problem was nothing to do with breast milk or anything like that because it still didn’t go, until they did further treatment and by that time the breast milk was gushing out, so the support was really poor.

I’m happy that he’s healthy you know, but what can you do, it didn’t happen the jaundice messed up everything that they would have at least supported me, you know, because just the following morning the breasts were full of milk, because the reason why he was put on the other milk is because they said I wasn’t bringing milk enough but again, that doesn’t even make sense because I think the first day or so the milk sometimes doesn’t come out, so long as you have the liquid gold, so the following day it was obviously a lot, but it was too late because they said that I couldn’t do combination, so once he was started on that one, that’s it, you can’t do both, so I had to just concentrate on the other one.

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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.

Then she was having donor breast milk in the hospital, so I had to give consent for that because it’s something they ask me for because she need nutrients and to put on weight, so they were weighing every option. At that stage, when she was so they asked me, I gave my consent for it. I know how I felt that day the very moment I gave my consent for that. I felt that I would I felt that I disappointed, I’m disappointed in myself like I did I caused this for her. She’s not meant to go through all of that. And this, I know it’s something that you can’t, you can’t avoid, some of these things around you can’t avoid it, even if you can’t avoid it but they are just ways you can get them without me knowing that this is the situation.

So, I felt really disappointed in myself that I put her through this, and I let her go through this because when you see other mummies there expressing and taking it for their babies, put their stickers name on them, put them in the freezer and for me I can’t do it. They had to use a donor one for her, which really breaks me down like. It really breaks me down because that let say there was no virus or anything. Even if it’s three months, I’ll be able to give it to her for three months actually I know my mind is at peace she has something from me for that three months, but that never happened. So, me giving my consent for the donor one was really now heart breaking for me but, at the end of the day, I did it, but she was not reacting to it properly, what they wanted her, so they took her off that one and then started giving her some other form of nutrient.

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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).

It’s like I choose the wrong thing to do, it was not wrong to do, and I, you know when we’ve got children and we’ve got an appointment every month with the babies to see if they’ve got the virus. I mean I was breastfeeding and the baby was fine so what was the problem? Because to be honest I’m taking my tablets in time, I take my tablets I give baby the medicine, the way they said, I follow all the instructions, so what’s the problem there?

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

In my opinion, the current triangle policy is not human-centered. To expect that HIV-positive moms – who are already under a great degree of pressure and scrutiny to ensure they do not pass the virus during pregnancy – exclusively breastfeed for 6 months without cracked nipples, mastitis, gastrointestinal issues for either mother or baby, supply failure, or other host of potential roadblocks for a reduction in risk that can't really be quantified and could be negligible, is not an ideal policy response. It piles on the mother, and only accounts for the costs of breastfeeding via transmission risks, without also factoring in benefits from a mental health or bonding, immunity, or financial standpoint. To give some last-mile perspective, according to the specialist in my hospital, of the 20 HIV positive mothers who have attempted to breastfeed, only 2 (or 10 percent) were able to get to the six month goal post with exclusive feeding. The guidelines as they currently stand do not really empower HIV positive women, they guilt and suffocate them.

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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.

My first daughter got discharged and she was fine and I thought, ‘okay let’s, I mean if she’s done it and she is fine then there should be no problem with my second baby.’ The only reservation I had, and I still do have and I just have get through it is the injections once a month that they have to get blood test.

I am considering taking my, this one off a bit earlier because she’s not taking to the blood tests as easy as my first daughter was so that’s the only reservation they have to get pricked every, once a month and it’s not nice to watch.

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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.

Yeah, we decided, together with my partner, we decided straight away to don’t go further than the first month, maximum one month but actually we could only for a few days because after my breast started to be painful and it started to be cut so I don’t want to take any risk and that when I decided to start with the formula, so I breastfed fed just for a few days.

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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).

I had a really smooth ride. That’s why having to stop was so difficult because I was really enjoying it. To be honest with you, I was only meant to stop at six months, but I carried on, so I delayed introducing complementary foods to him. I think I stopped breastfeeding somewhere near around eight months, I think.

If I decided to give him food I needed to stop, that was it. I can’t give him food and then go back to breastfeeding. It needed to just, okay once it’s reached the normal breast, something like that. It had to be one or the other and once food was introduced, I could not go back to breastfeeding.

I did not want to stop breastfeeding first and foremost, but he was pining for food, like he’d see food on a plate, and he’d pine for it. So I have a sense of guilt, you know, that I was because I mean it was time, he was six months and he was a big boy so he really, was really interested in trying, you know, foods off a plate, you know, so I would let him try, I would let him nibble once in a while but yeah I’d let him nibble against advice of my doctor so yeah, yeah I did that.

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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.

So the doctor called me and said oh, you know, ‘oh we’re in really deep water because, you know, I thought you’d stopped feeding and, you shouldn’t still be doing it, you know, he’s 15 months now you know’, I think he was saying, like he really panicked me because he was like, ‘you know, the guidelines are that he should stop after six months, and you know, you’ve already done it for long enough now and, you need, basically’ saying to me you need to stop as soon as possible. So, I kind of panicked I was like, you know, what’s going on and, you know, am I putting my son in danger and what is it, what is the reason why he’s kind of telling me to stop this, I think I didn’t really question it.

I miss breastfeeding, it was difficult the first few days like for both of us like because he wanted the milk, I mean I was only feeding him day and night at that point so I wasn’t like stopping a lot of feeds so it was just day and night but it was difficult because that was his little comfort, I know he wasn’t doing it out of hunger it was just his comfort thing. So the first few days were difficult, but obviously, but just having to stop and obviously the pain of having such full boobs at the time but yeah no it was fine, I was just, yeah it was fine.

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