Layla

Age at interview: 35

Age at diagnosis: 21

Brief Outline:

Formula was recommended when Layla’s first child was born prematurely based on there being limited data on HIV transmission risks in premature babies. Layla feels that having formula fed her older child made her decision to formula feed her new baby “a bit easier”.

Background:

Layla is Black British African and is married with two children, a 3-year-old and an 11 month old baby.

More about me...

Layla was diagnosed with HIV in 2007 when she was 21 years old, after a condom split with a former partner. She was shocked at her diagnosis, but medical staff reassured her.

Layla began medication when she met her partner (who would later become her husband). Her husband does not have HIV.

Layla was advised not to breastfeed her older child when he was born premature, and the UK infant feeding guidelines had only just changed the year he was born (making breastfeeding an option under certain conditions). Layla had wanted to breastfeed her new baby, but her husband was less keen. Due to her international work, Layla was aware that women with HIV are encouraged to breastfeed in different parts of the world. She asked to speak to other mothers who had breastfed in the UK, but there was no one local that the medical staff could connect her with. When she decided to formula feed, though, her medical team was happy. Layla has had a positive experience with formula feeding and feels assured knowing there is no risk of transmission.

Layla will receive free formula milk for up to a year. She also received free formula milk on the maternity ward. Her and her husband bought the other equipment such as bottles and sterilising equipment.

Layla was worried that people would ask why she was not breastfeeding, but lockdown restricted the number of visitors she received as well as questions about her infant feeding decisions.

Layla had considered breastfeeding because she knew that breastfeeding is encouraged in East Africa, but eventually agreed with her husband’s choice to formula feed.

But I was, obviously coming from East Africa and having, because I volunteered for [International organisation] in East Africa when I was doing my Masters and I remembered seeing women with HIV and they were breastfeeding because that was considered a lot more safer than formula feeding in East Africa this is, but obviously because I think of water contamination and stuff like that the women were encouraged to breastfeed. But I know that was a possibility but because it wasn’t happening here I was like there’s a reason why it’s not happening is because of the risk that’s there so I just decided no, I’d best not risk anything at all really.

And how do you feel like do you have any thoughts on different guidelines depending on where you live in the world?

I guess, I don’t know it’s really difficult, obviously living in the UK is very different to living in East Africa and I guess the risks here and there are very different as well in terms of hygiene and things like that. But I don’t know I guess I would have to go with where I live.

Layla felt that her GP was sending her back to HIV services for care they could deliver themselves.

I guess the worst experience was with my GP all the time because they don’t, they’re not aware, they’re not familiar with HIV so they’re quite happy just to send me back to my consultant, my HIV consultant. Even with things like, because I suffered a lot with thrush during pregnancy, they kept on sending me back to the HIV team, which I thought actually something that they could really look into it rather than me having to see the sexual health clinic which is, which comes under my HIV clinic as well. So I think there’s a, I don’t know there’s isn’t a lot of understanding in GP surgeries around HIV I mean you’re lucky to get somebody who has had some experience with patients with HIV so I guess that’s probably due to the, where I live? I don’t know. There isn’t that many cases of people living with HIV.

Layla felt she treated just like any other woman giving birth. She was pleased to have a private room while her baby was in the neonatal unit.

Even with the HIV my main issue was always the HIV, but even going in knowing that I had HIV they just treated me as any other lady, any other woman giving birth and even after, because with my son after I gave birth to him I was put in a private room so straight away I was like hmm but I think it was more to do with because I didn’t have my child immediately with me after birth, they didn’t want me to be around the other mums with babies. Because that would be quite uncomfortable really for me to watch someone else with their baby and mine is upstairs in the neonatal.

Layla felt uncomfortable that a doctor spoke to her about HIV while she was on the ward. She was worried people would overhear.

The only other thing I was uncomfortable with was the doctor coming to talk to me about my HIV and I think she was trying to say to look just to double check what medication I was on and things like have I got enough to keep me going for the next few weeks before my next appointment and she was talking to me about it but it was in a cubicle but the only thing that was blocking us was just a curtain, so everyone else could hear what was being said which was a bit uncomfortable because whilst I was there I was a opposite another lady who I knew she was where I work, knew from where I work, was a bit like “really, did you have to do that, really loudly in front of everyone?”

Layla was happy with her choice to formula feed and had not found it difficult.

Absolutely fine I can’t really fault it, if anything it helped, it helped the baby to grow a bit quickly [laughs] but yeah there hasn’t been any side effects or any negative really. And actually, her being born in lockdown it was really, because I wasn’t, I was thinking like oh what will I tell my friends if they constantly asking me why you are not breastfeeding again and blah, blah, ball, but lockdown helped because I spent the first three months at home anyway in isolation.