Holly
Holly (played by an actor) was diagnosed with HIV in 2014 when she was in her early 30s. Initially, Holly had intended to formula feed as she herself was formula fed as a baby. Recently, however, she and her partner have been considering breastfeeding because of the additional health benefits.
Holly is White British and is seven months pregnant with their first child. She lives with her partner, Stephen (also interviewed).
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Holly was diagnosed with HIV in her early 30s. She found it very upsetting and “felt ruined” by it. She had the HIV test after a former partner called to tell her he had been diagnosed with HIV. The healthcare professional who gave Holly her diagnosis told her to be careful about who to share her diagnosis with. Holly chose to tell close friends and some work colleagues.
Holly has dated her partner Stephen for five years. Stephen does not have HIV and is comfortable knowing her HIV status. Holly has appreciated the conversations that she’s had with her HIV doctor and that she lives in a part of the country were people are generally well informed about HIV. She did have one negative interaction with a midwife who looked visibly uncomfortable on hearing her HIV status and seemed to “grimace” even when she said “HIV.”
When Holly became pregnant, initially she had thought they would formula feed the baby to avoid all risk of HIV transmission. However, one of her family members (not living with HIV) recently gave birth and Holly saw how the baby “chunked up” quickly after being breastfed. Holly’s partner, Stephen, was always supportive of breastfeeding because of the health benefits. Stephen also joined her early medical appointments. Holly thinks she will breastfeed for the first month. The main reason she changed her mind was that she felt breastfeeding has more health benefits for her baby and might be more practical than formula feeding.
Holly has mainly focused on the information given to her by her HIV doctors. She had searched the internet for information on HIV and pregnancy, but not infant feeding specifically. She has not spoken to other mothers living with HIV because she wants to “ignore” that she has HIV and does not want to spend a lot of time thinking about her diagnosis.
Holly was confused about some aspects of the 2020 BHIVA guidance, for example, on mixed feeding and what to if she had mastitis, so she was planning to speak to her HIV doctor about this at her next appointment.
Holly was advised not to tell many people when she was first diagnosed with HIV (played by an actor).
Holly was advised not to tell many people when she was first diagnosed with HIV (played by an actor).
Yeah, I mean there were a few things like really remain with me, the lady who immediately diagnosed me then and then and there said ‘don’t go around telling everyone’ and that was really valuable yeah advice I think, so I only chose to tell, you know, a few individuals really and so like family, my housemates at the time and some key people from my job.
Holly changed to a female doctor to start conversations about having a family (played by an actor).
Holly changed to a female doctor to start conversations about having a family (played by an actor).
I would have been in my 30’s so I, starting a family would have been on my mind so I asked to be transferred to a female HIV doctor, so yeah, I think definitely a conversation about babies happened. Yeah, all the correspondence from them was really positive and really supportive and, oh, what I really liked about them as well was if I asked a question, one that was really scientific or they really would try and share the science with me and not just kind of dumb it down, I quite liked that. So yeah, so I’d ask a simple question like, “Am I gonna be able to have a HIV free baby?”
Holly feels that clinicians might feel obliged to encourage formula feeding over breastfeeding (played by an actor).
Holly feels that clinicians might feel obliged to encourage formula feeding over breastfeeding (played by an actor).
I think all the initial advice was kind of what doctors are required to do, just play ultimate safe, all of them were like, you know, “you shouldn’t, but you can.” They were like, you know, yeah so really like, “it’s really advised that you don’t and it, and they still say that they really advise that you don’t, but you can if you want”. And again someone with HIV who was all perfect and pure once upon a time it’s really lovely to hear that you can if you want. And just that kind of support that is offered and encouragement and positivity, you know, the baby, I feel like the doctor’s obliged to say “no, no, no, no you really probably shouldn’t” because that’s part of probably just the NHS isn’t it, they’ve always got to advise the better course of health or action or something like that.
Holly found it frustrating when she met a midwife with who held negative attitudes about HIV (played by an actor).
Holly found it frustrating when she met a midwife with who held negative attitudes about HIV (played by an actor).
And I had to kind of help her along a bit with approach and things and kind of like, kind of have to just try and make it less of a big deal, so yeah it wasn’t great doesn’t kind of fill you with confidence when your midwife speaks to you and can’t quite process HIV. But that’s just what it felt like on my side. I think she had the associations with people that might have got HIV and how they might have got it and so I think it was to do with social standing and I don’t think she could place me about where I came, like in society, I don’t know. So, the thing is she was having like a computing issue in her brain about how to talk to me and how obviously very negative associations with HIV, whereas because of course I’ve come to grips with it to a certain degree and she was like grimacing every time she said HIV.