Marella

Marella formula fed her eldest child but is planning to breastfeed her second baby. She read research papers, attended conferences and spoke to her doctors, her husband and her mother to help her make this decision.

Marella was born with HIV and started taking medication during adolescence. She is well-informed about HIV, and from a young age she knew that she would be able to have children born without the virus. Marella is married and her husband (Edward)[TR1] does not have HIV. They have been together for a few years. She was pregnant with their older child when the UK infant feeding guidelines changed to state that although formula feeding was still encouraged, mothers with HIV wanting to breastfeed could be supported to do so if they had an undetectable viral load. Despite meeting the criteria, Marella and Edward decided to formula feed their eldest child because it was their first baby and at that time, they did not feel they had sufficient understanding of the risks involved.

At the time of interview, Marella was pregnant with her second baby, and this time she was planning to breastfeed. She works within HIV care and advocacy, and in the previous two years she had done a lot of her own research about HIV transmission via breastmilk. She also found two lactation specialists, including one who specialised in HIV and breastfeeding (privately funded). With all this in place, Marella and Edward felt more confident about choosing to breastfeed this time. Marella wanted to experience breastfeeding for the associated health benefits and bonding with her baby. She clarified that her desire to breastfeed was not due to hiding her status, as all her loved ones know that she and her mother are living with HIV.

Update: After she gave birth, Marella sent us an update about how she found the experience of breastfeeding. She said that it was wonderful, and that this aspect is not talked about enough by medical staff, who often focus solely on HIV transmission risk. Marella also described receiving mixed support from her medical staff: while her HIV consultant and midwife were supportive of her plans to breastfeed, her paediatrician had warned her not to be stubbor if breastfeeding did not work. Because of the inconsistent support, Marella contacted an HIV physician involved with the UK pregnancy and infant feeding guidelines (whom she knows through her advocacy work) for additional guidance and support. Marella is happy with her decision to breastfeed.

[TR1]Ruth/Jo/Adam – can we hyperlink to Edward’s biog or TS12 (partners)?

Marella believes breastfeeding is wonderful and discussions about infant feeding should include topics that go beyond HIV transmission risk.

Age at interview 30

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. All of those things, I guess you don’t get told because it’s so much about transmission, transmission, transmission and preventing transmission.

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Marella believed that some Black cultures are more accepting of breastfeeding so there is a greater expectation to breastfeed if you are Black.

Age at interview 30

So, for example, if you’re in a café and you produce your breast to feed your child, you’re more likely to get  discerning looks from, I don’t know, elderly white woman or an elderly white man or a white woman or white, it seems to be the people that complain are those from white communities, because I feel that in the black community breastfeeding is seen as such a natural thing like I’ve been to so many functions or barbecues, I know we had all these barbecues are occurring during lockdown, but when we were allowed to go to barbecues [laughs]. It was so natural to be, I don't know, in the living room and my aunty just breastfeeding her child or a cousin breastfeeding like it just seems I grew up and that was the way it was. When I went, when I was a family in Zimbabwe, like it was so normal to be at a restaurant and a mum will just breastfeed her child or she’s in the car just breastfeeding.

It was, so, there wasn’t all these contraptions to sort of put round your neck and hide round the baby and tuck the baby in. It seemed like a very western issue that we have with breastfeeding. So, I think when, you know, black relatives perhaps especially older black relatives see you not breastfeeding your child that they find it very difficult to sort of comprehend because I guess we don’t have the same shame in terms of, but you could breastfeed it. We are all women in this room. We are all having a meal and that’s fine. So what could be the reason that you wouldn't be breastfeeding?

‘Cos it’s not because you’re embarrassed. It’s not because it’s not natural. There must be and if it’s something, if it’s because you can’t as in because you’re having pain or because you know the baby isn’t latching, “Let me show you”, you know. A black woman want to support each other and help you to do that. But I guess from that, I guess it can also become a very point of, if I don’t want to I think that they’re the first to offer or to offer assistance, but there’s a catch 22 there’s the support is there in terms of being able to and be free to do so. At the same time you’ve got that difficulty that if you don’t want to it’s very noticed very quickly. Yeah. And I think as a white woman, if you’re not breastfeeding and I’ve seen it myself when I’ve gone out in groups of white women who are, you know, we’re all, we’ve all got our babies and if you ask people how they’re feeding their child or if it comes up how are you feeding your child, if you say, just didn’t work out for me, case is dropped. No-one will ask.

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Marella’s paediatrician told her to not be stubborn if she is unable to breastfeed, but her specialist midwife was supportive.

Age at interview 30

During my meeting with the paediatrician, she had actually said to me that, you know, “If this doesn’t work out you need to not be very stubborn with it.” and I said, “What do you mean by stubborn?” and she said, “Well because for a lot of people, even, you know, those without HIV, breastfeeding doesn’t work out and, you know, you can get sore nipples, cracked nipples, you know, I even have babies who come into my clinic that are malnourished because they have mums who just didn’t wanna give in to giving them formula.” And the midwife who was in the meeting as well said, “Oh come on like that’s not that’s not that common,” and the doctor, “Oh no I do get mums who, really, really don’t want to give in to giving a bottle or giving a whatever,” and I said, “like, I said, “I’ve done my research, I know that things, it’s not easy but I’m prepared to sort of try my best”. I don’t think I even responded to the comment about not being stubborn but I said, you know, “I was prepared to work hard to sort of make it happen and at no point would I give in to mixed feeding because I knew that was a sort of a no-no,” so that meeting annoyed me.

And again, I was handed a paper copy with the BHIVA guidelines and I said that they could keep them because I already them printed and yeah giving them to me at 39 weeks if she thought that was the first time of reading them felt very, very late and very silly and I was very annoyed by the meeting if I’m very honest with you.

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

Age at interview 30

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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Marella was pleased that her lactation consultant did their own research about HIV and treated her the same as any other mother.

Age at interview 30

So, I sort of want everyone in place before. But I just know who to call on. And we found a lady who, she’s not specifically like HIV within those services. She’s just a woman who’s really passionate about breastfeeding and lives locally to me again, which is useful. So, she can just pop over if needed. and she was saying that again, she’s not supported any woman with HIV. However, she’s actually the model is the same. That fact that I have HIV shouldn’t be any different because what we’re trying to achieve as a successful breastfeeding journey the issue of and she’s now doing her own research in terms of – and the funny thing is I was more scared for her to go do her research and then come back and be like “Whoa, you know I said, actually, far too risky babes, so I’m not doing it.” She came back and said, “By the way, I’ve read loads. I’ve you know, I’ve read all the things that you told me to read and done some additional and actually it seems like you know, I’m gonna treat you the same as any other mother. But we’re just not gonna leave things, you know, to chance”. But people who find a lactation consultant want additional support anyway.

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Marella and her husband Edward looked for a lactation specialist while she was still pregnant (played by an actor).

Age at interview 30

I’d mentioned it to my husband and he said that it was a good idea was to have a private lactation consultant, so I think when you give birth, you have access to like a feeding team. But again, that’s sort of like you’d go to like sort of health visiting clinic and they would support you. But I think we’re very fortunate. Obviously, we can afford to have like additional support. So, paying someone privately that can come on day two to make sure that I’m doing it right and we don’t have to rely on having to book an appointment and perhaps that appointment being like in a week’s time. Because I know that the window of it going wrong or like if I do get an infection there’s a smaller window that we can correct it.

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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.

Age at interview 30

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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