Nozipho

Nozipho found out she had HIV in 2013 after going for tests for a suspected yeast infection. On the basis of her medical history, doctors suggested that Nozipho probably had HIV from birth. She formula fed her baby even though this had not been her plan.

Nozipho remembers she was a very, very ill chil but was never admitted to hospital for anything. When Nozipho found out she had HIV, she told her mother and her grandmother about it. Her mother wasn’t very supportive, and her grandmother told her You were very sick, we suspected it When Nozipho told her father he told her he has it too. Nozipho then found out her mother also has it but didn’t want to say. Her fiancé doesn’t really kno about her status; she has not told him she has HIV but she does not hid her HIV medication either.

Nozipho became pregnant while she was abroad and was in her second trimester when she came back to the UK. Nozipho likes to do internet research herself and found out before she was even pregnant that mothers with HIV are able to breastfeed. When she became pregnant, the midwives were telling her to formula feed because the water is good here, and she can get free milk, but she fought it all the wa because she wanted the bond of breastfeeding her child.

However, when Nozipho gave birth, she was exhausted and when a nurse asked her about giving her baby some formula milk, she agreed to it in that moment. Unfortunately, once this had happened, she was told that the 2020 BHIVA guidelines discourage mixed feeding;, and so she could not breast feed anymore. Nozipho was then prescribed a pill to dry up her milk, and she still feel very disappointed about this episode.

Nozipho gets support from an HIV charity; she used to attend a support group but has stopped going because another member of the group did not keep confidentiality. She still keeps in touch with the support worker, though.

For a while Nozipho did not know that she could get free milk from an HIV charity. Her healthcare team told them formula milk had to be bought from the pharmacy, and this caused a lot of confusion, and her fiancé spent a lot of money on formula milk. A few months later, Nozipho’s HIV support worker advised her how to get the milk for free.

Nozipho says friends and other people have asked her why she is not breastfeeding and she told some that it was due to blisters or because her baby couldn’t latch on. With people she doesn’t know well, she told them she had breastfed for the first few months.

Nozipho says that the Covid pandemic has had positives and negatives for her. While she loved having some peace and not being pressured to do anything, she also felt she was not taken care o by the healthcare system because of the pandemic restrictions.

Nozipho shared a time when she saw her friend’s mum at an HIV support group.

Age at interview 30

Age at diagnosis 26

So one of my friend’s mum, I met her there, and obviously when you go to, it’s like when you go to an alcoholic place. You know why someone is there, so for me I felt like okay, she’s here, she now knows, and let me just be open. And her daughter was a very good friend, well she still, we’re still friends. But she was a very good friend of mine at that time, but she didn’t know because it’s not something that you obviously, you want people to know because of stigma. And she was okay while we were there, and then the next day my friend is asking me that “My mum saw you, my mum says you are this, this you are HIV positive.” And I was like “Me?” And she was like “Yeah, yeah she says she saw you.” So I said “Why was your mum there?” She said “Well my mum, you know she does voluntary stuff so she’s there for voluntary reasons.” I went “I don’t know what your mum is talking about but I was there for voluntary reason too. She says she was there for voluntary, so was I.”

But anyway they’re taking me bad, because she’s old, not old, but she’s, do y’know, I’m still getting my life together. I’m still young, I just feel like okay, if people are keen to talk about you, and not okay to talk about themselves then that’s when I stopped going back because I felt like I was putting myself at risk for people who know me, and going around and spreading.

Embed Print Transcript

Nozipho did not feel discriminated against, but she did worry about the increased risk of maternal death in Black women.

Age at interview 30

Age at diagnosis 26

Because of Covid to be fair like you don’t see a lot of things because they want you out of the hospital [laughs]. No, no I’m not going to lie, I didn’t feel any, I didn’t notice anything. But I was scared, because when I was pregnant, not sure if you’re aware there’s two girls that died like this popular Youtuber and there was this whole thing, “Oh they don’t treat black people right and blah blah.” So I, it, I’d be lying like it was in my mind so I remember when I had my C-section and I didn’t want to close my eyes because I thought I was going to die. Not because of anything, it’s nothing to do with. I didn’t feel any, any difference, no.

Embed Print Transcript

Nozipho found formula feeding difficult, especially during night-time feeds.

Age at interview 30

Age at diagnosis 26

To be honest like I went through a phase where I hated it, because I wake up in the mornin- at night and he, you know like you feel like when you’re breastfeeding you just take your baby and put them in your boobs and you don’t feel the pressure of having to. Because you’re holding a bottle, and you’re tired, you, for me I hated it in the first few months because of that reason. Because at night you couldn’t just have like a night where because with bottle feed you have to be careful. Are they choking? And afterwards you have to, what do you call it? Burp them. Not sure if you breastfeed you burp. But you have to burp them and things like that and it was you know, I hated it.

Embed Print Transcript

Nozipho is of African descent, but said that being younger means she was not expected to breastfeed and that she knows young Black women who formula fed.

Age at interview 30

Age at diagnosis 26

I mean, I think our generation is quite different as well in terms of breastfeeding because I’ve got friends that choose not to breastfeed. Not because of anything, it’s just their choice. They don’t feel comfortable with it or you know, yeah.

Embed Print Transcript

Nozipho feels it doesn’t make sense that having unprotected sex with someone is considered less risky for HIV transmission than breastfeeding a baby.

Age at interview 30

Age at diagnosis 26

I’d made up my mind because I knew the chances. Because I’m feeling like if you telling me that you can have sex with someone and they do not get HIV, how is that different from breastfeeding your child? Because I feel like that part it’s more riskier than the child breastfeeding from the breast. I don’t know maybe, I could be wrong because they, it’s like they are both the same to me so we can’t just sit here and say okay you can’t get it from having sex but you can get, the child can get it from you. Like I don’t know if it makes sense to me.

Print Transcript

Nozipho had wanted to breastfeed, but her baby was given formula in the maternity ward and her medical team told her that she could no longer breastfeed.

Age at interview 30

Age at diagnosis 26

You didn’t breastfeed?

After all that, no [laughs]. After all that. So basically I really don’t know. I had a very long tiring labour so, by the time it was done, I was so exhausted. So, the nurse I had epidural so I think my left arm couldn’t hold up. I couldn’t hold my arm, so the nurse who was looking after me that day. I think she asked something about giving him some milk, right? And so, me, I thought she knew, I thought she knew what was going on. I thought she was in, like up to date with my condition and my everything, so I thought she knew, and my partner didn’t know at that time. So, we were in a room, and I just didn’t want to be like “Oh no, no he can’t have this milk,” or something like that. So, I don’t know, in my mind, when she gave him the milk, I thought maybe it was okay as a one off. Because I was weak at that moment, so I thought it was okay, let’s just do for one hour. And the next thing they’re coming and telling me like “Oh no, because we’ve already given him this milk you can’t breastfeed anymore.” And they were quick enough to give me the pill to dry up my milk, very, very quick.

Embed Print Transcript

Nozipho’s midwives told her about free formula and bottles and ignored her wish to bond with her baby via breastfeeding.

Age at interview 30

Age at diagnosis 26

I was only aware of this advice when the midwives started telling me that because of the water here, we advise you to bottle feed and stuff like that. That’s when I was like “oh, okay”. Yeah so, what the midwives were telling me at that time that because here the water is good and they will give you free milk and free bottles, but to be fair I fought it all the way to the end. I did not want to bottle feed. I didn’t care about they are free bottles, I didn’t care about the free milk. For me I just wanted to have that bond with my child.

Embed Print Transcript