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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...
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The role of loved ones was important to the women we spoke to. In this section, women discuss the support they got while deciding how to feed their babies, throughout their pregnancy and after giving birth. They told us about whether, and how much, they had discussed with the father of their child about their pregnancy and infant feeding options, and their involvement in medical appointments. Some women discussed the support they had received from family and friends who knew about their HIV status. Women also described how they navigated awkward questions from family and friends who did not know they HIV status.
For some women, only their husbands and partners know of their HIV status. This sometimes meant they had to think of ways to explain why they were formula feeding, when questions were raised. Some women were separated from their husbands and did not to talk to them about their decision. Two women were in relationships where their partners did not know, so they could not share the guidelines with them.
The majority of the women we spoke to had at least one person who knew their HIV status (beyond their medical team), and most of the time it was their partner. Women like Marella, Sasha, Sinead, Christine, Layla and Stephanie had discussed with their partners about whether they would formula feed or breastfeed.
Christine felt supported by her partner, who said it was up to her. He said “whatever you feel comfortable with.” Similarly, Maya’s partner wanted her to do: “What would make me happy as well. Because again, it’s in my body, I would be doing the work.” Maya decided with her partner to formula feed their baby, and when her partner’s mother would ask why they are formula feeding, they would reply “Because we want to.” Meanwhile, Layla and her husband talked about infant feeding but had differing opinions. Layla had seen women with HIV breastfeeding in Kenya and was therefore interested in that option. However, her husband wanted to remove all possible transmission risk, and so eventually Layla also agreed with him and formula fed their baby.
Some women like Sasha mainly went to their appointments alone and then shared what they had discussed with medical staff with their partners. Others, like Lana and Maya, typically went to their appointments with their partners.
The two fathers we spoke to supported their partners’ feeding choice. They were interested in the science of HIV transmission and the latest guidelines but did not necessarily attend all the medical appointments.
For most women who were in a relationship, the support and advice from their partner was important in making their decision. We spoke to Marella’s and Holly’s partners about their decision-making regarding infant feeding (both women were still pregnant at the time).
See more on the experiences of partners of women living with HIV.
Some women did not talk to the father of their child about their feeding decision – this was for a range of reasons. Maria’s husband knows her HIV status, but because he is so ‘heavy on breastfeeding’, Maria did not share that the UK infant feeding guidelines encourage formula feeding. She had always wanted to breastfeed and was ‘relieved’ when she learned she could breastfeed with support from her HIV doctors, and therefore did not have to raise the topic with her husband.
Biola’s husband does not know her HIV status as she became HIV positive before they met. One of the reasons she breastfed was to avoid raising any suspicions about her HIV status from him, and she worried every time he tried to give the baby food.
At the time when we spoke with them, Gracelove and April were separated from the fathers of their babies, and had therefore not discussed with them about their infant feeding choices.
For women like Marella, Sasha and LeaSuwanna, most of the people in their lives know their HIV status, which has meant for the most part, they could be honest about their feeding decisions, regardless of whether they choose to breastfeed or formula feed. There was a range of practical and emotional support and advice on offer from their loved ones. Marella’s mother supported her decision to breastfeed. Kay’s close friends and family also know her HIV status and supported her decision to breastfeed. Emily spoke to her partner and family about what decision to take.
For Sinead, Holly and Tina, a few close family and friends know. When Eriife decided to breastfeed her baby, her family and friends gave her breastfeeding advice in the first few weeks of her baby’s birth.
Women like Camille, Holly and Tina have only a few people who know their HIV status and with whom they have shared their feeding decision. As with Camille’s experience (below), keeping one’s HIV status secret can be stressful when there is a baby to feed, but supportive friends can help.
Women whose family and friends did not know their HIV status sometimes had to navigate questions about their feeding choices. Stephanie recalled asking her doctor for advice on how to deal with her loved ones asking why she was not breastfeeding. Her doctor suggested some medical-sounding reasons, such as the baby arriving early, to stem the enquiries (and they worked). Like Stephanie, Amy also thought of things to say before she had even given birth, because she knew she would be asked. Sinead told people she was not breastfeeding for health reasons, while Layla told those who asked that she “wasn’t producing enough milk”.
Still pregnant, Amina was especially concerned about how she would manage her mother’s questions, given that she lives at home with her. Her mother-law was also planning to visit. Amina expected they would want to guide and support her to breastfeed and was not sure how to handle that.
Nozipho’s and Biola’s partners do not know their HIV status. Nozipho was born with HIV, so some of her family know her status. When she was pregnant, Nozipho had talked about her decision to breastfeed. However, maternity staff gave her baby formula milk on the maternity ward when her milk was slow to come. Since this had happened, the maternity staff (incorrectly) advised her that she could no longer breastfeed her baby. Nozipho’s partner does not know her HIV status so asked her why she had ‘changed her mind’ about breastfeeding.
We found that women of African and Asian heritage received more questions about why they were not breastfeeding compared to White women (see also Social Identity, belonging, stigma). Diablo told us that the questions make her sad. A few women who formula fed talked about how they felt guilty about not breastfeeding their babies, and people asking questions reminded them about it.
Despite being of South Asian and African heritage respectively, Amina and Maya said that being young and growing up in the UK meant that there would not be less pressure and fewer questions from people than in other settings. As described above, Amina was mostly concerned about meeting the expectations of her mother and mother-law. Meanwhile, Maya believes formula feeding “wouldn’t raise any flags” among the people who are not aware of her HIV status. She comes from a big family and her older sister has experiences with breastfeeding and formula feeding, and many of her friends have formula fed.
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...
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