Amina

Amina was diagnosed with HIV in 2021, the same day she found out she was pregnant. She is undecided about whether to breastfeed or formula feed her baby.

Amina was diagnosed with HIV in 2021 and found out she was pregnant on the same day. When her husband was diagnosed with HIV, he told her she would need an HIV test. During her clinic appointment, after she received her HIV diagnosis, she asked for a pregnancy test. Amina believed it was a positive thin to find she was pregnant at the same time and it helped her cope with her diagnosis better.

Amina began HIV medication straight away to prevent HIV transmission to her baby. Her HIV doctor referred her to peer support to meet other women living with HIV. Her medical team has informed her about the options for infant feeding.

At the time of interview, Amina was undecided about whether to breastfeed or formula feed. She is focused on reducing HIV transmission but is also aware that her mother (who she lives with) and mother-in-law (who is likely to visit when the baby is born) would question her if she did not breastfeed. Amina and her husband have not shared their HIV status with others. They both live with Amina’s parents and siblings and have to hide their HIV medication tablets in their bedroom and use secret codes when they want to communicate with each other about HIV. Regarding infant feeding, she believes that it is a decision for her to make, and that it did not really involve her husband, but he would support her decision.

Amina has done a lot of her own research; she has looked at the BHIVA guidelines and other online sources about infant feeding while living with HIV, and the risk of HIV transmission via breastmilk.

Amina thinks formula feeding is becoming normal now and that women have a range of reasons not to breastfeed.

Age at interview 23

Age at diagnosis 23

I think in the UK, I think we’ve got formula and access to formula, and I think formula is good enough. Yeah, women are not choosing to breastfeeding, because they’re not, I don’t know why they don’t, but anyway, maybe they don’t want to be attached to the baby all night or I don’t know. Or I don’t know, does it make your boobs saggier than if you didn’t breastfeed? Probably not but yeah, I think it’s normal now to choose not to breastfeed maybe they’re not around as much to make that happen because they’re working, that kind of thing.

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Amina discussed HIV stigma in the South Asian and Muslim community.

Age at interview 23

Age at diagnosis 23

We decided that yeh, we decided from the best, just it doesn’t affect anyone anyway and I think it will do more harm, certainly for me, than good for anyone to know or so it’s just the nature of the disease alongside, combined with like the shit from the Asian community that we’re from. And even like, you know, religious perspective as well, I wanna, maybe when I’m more confident or a bit later on, I want to ask questions to like religious scholars and ask them why like a disease like this was so frowned upon in society I think it’s associated with like sleeping with multiple partners and that so, but why the fuck should I be ashamed of a disease. Sorry, I swore [laughs].

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Amina did not want to take the risk of transmitting HIV by breastfeeding and has seen healthy formula fed babies within her family.

Age at interview 23

Age at diagnosis 23

Like if I think of it in a spiritual way or like away from science way it’s like milk, I produce milk to be a nutritious and food for my child. If there is a possibility that that could be tainted or not give the child, the nutrients, or alongside giving the nutrients give something else, it’s not a risk that I personally would want to take. And they say, the doctors say, you know, there are safe ways of doing it, in my head, if the lines have been crossed, I can’t see how they can undo it, if you know what I mean, but, obviously, if there is a way, the doctors can show me that there’s a no, that there’s a good gap between risk and or the point of risk, then I may consider it but right now, living in London, having access to formula and these kind of things like a lot of my nieces and nephews none of them were breastfed and I don’t think it was because their mother was HIV, just because she preferred not to and they’re healthy babies, they’re not small and that, babies look healthy so I don’t see why I should possibly put my child at risk.

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Amina is early into her pregnancy and is worried about questions from her mother and mother-in-law.

Age at interview 23

Age at diagnosis 23

This is something that I’m worried about in within my household because I think, I live with my mother. I think outside of my household, I should be fine. Just living with my mother, I know she’s breastfed, you know. Just living with her, it’s going to be a bit annoying. I just want to get out and kind of move on because she, I think she will try to, like she will actually tell me, “Just try, just try.” Or like I knows there’s excuses again because I think it’s more like nipples being cracked or something, I dunno you know, the way the liquid comes out but there are reasons I can tell people, but my mother will kind of, if she sees me especially I’ll be living with her 24/7 I know she’s going to be looking after, helping me look after my child, she might be like, “Oh just try.” Or like, “I’m here, don’t worry, just try.” She will try and support me and it’ll be a sweet thing for her to try but I will get that pressure from just my mother I think. I think no one else. My mother-in-law, she might be coming to this country like to see the baby so that’s going to be another pressure. Yeah, my mother-in-law is really old school but yeah, so there will be pressure from my mother and my mother-in-law but no one else.

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Amina was diagnosed after her husband told her of his diagnosis.

Age at interview 23

Age at diagnosis 23

He struggled to tell me at first. I think he struggle to tell me but, obviously, I needed to go and get tested as well. And so and so I knew there was a build-up of something happening, something coming up, something wasn’t right, that’s why he asked me to go. Then slowly, you know, we were able to speak about it. Yeah, it’s been difficult but, obviously, we still haven’t processed it. To be honest I still personally haven’t been able to process it and just putting all my energy toward the pregnancy and that because, you know, it was all in a matter of a few minutes.

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Amina was diagnosed with HIV and found out she was pregnant the same day.

Age at interview 23

Age at diagnosis 23

I think the fact that it happened on the same day like, it was like I believe in God like I am a Muslim woman. I have a strong faith in God. So, the fact that He hit me with bad news and then somehow, okay here’s something for you to hold onto or something to live for, kind of thing or like, you know, be positive for. I feel like yeah, my pregnancy is a positive thing and not like oh I’m burdened with a pregnancy now. Look now I’m happy again. I mean I’m still pregnant.

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