Sandra

Sandra was diagnosed in 2010. She had looked into feeding options before getting pregnant and knew that it was possible to breastfeed, however she did not want to put her baby at any HIV risk, so chose to formula feed. Sandra felt supported by her doctors to make her own decision.

Sandra was diagnosed with HIV in 2010 when she had travelled to the UK to study. When she registered at the GP, they offered her sexual health screening. Her chlamydia test came back positive, so they advised her to have an HIV test. At the time she had only been in the UK a few months. She was referred to a clinic for HIV care. There she was offered peer support but found it difficult because the support worker was more focused on herself told her that her husband had left her because of her HIV diagnosis.

Sandra was diagnosed before there was scientific evidence showing that people with HIV on treatment, with an undetectable viral load, could not pass on HIV through sex (this is called Undetectable=Untransmittabl, see Glossary[TR1]). Sandra worried about dating and had different (unpleasant) experiences when sharing her status with others. She recalled that some men can get violent if you tell them too early or call the police if [you tell them] too lat.

Sandra told her husband about her HIV status soon after they first met and he was supportive of her. Sandra and her husband decided to formula feed, to remove all risk of HIV transmission. Sandra describes herself as a risk averse perso, wanted to follow to the safest option, and would not be relaxe about the small risk of transmission through breastfeeding. She also thought the guidance and the British HIV Association (BHIVA) Safer Breastfeeding Triangle [TR2]was quite complicated. She also did not like the idea of additional blood tests for her baby. She did a lot of her own research and read information on the BHIVA website. Sandra avoided discussing her decision with other mothers with HIV so that she would not have too many different opinions.

Sandra was offered free formula milk on the maternity ward and after discharge, but declined, because she could buy her own and felt it should be given to people who were more in need. Sandra was fine with the process of formula feeding, she felt it might have been easier than breastfeeding.

Sandra was disappointe when the health visitor asked her why she was not breastfeeding – she expected questions from family and friends but felt medical staff should be better informed. Overall, Sandra believes she received better care during her pregnancy than women who do not have HIV. For example, Sandra continued to have in-person appointments when other women were having them remotely.

[TR1]Please add hyperlink to glossary

[TR2]Hyperlink to Resources

Sandra was disappointed when a health visitor questioned why she was bottle feeding. She expected them to have better knowledge (played by an actor).

Age at interview 32

Age at diagnosis 21

I think the most disappointing thing was my health visitor because she wanted to know why I was bottle feeding and she said, “Why are you not breastfeeding?” and yeah with my friends and family I can forgive them because they’re just curious but as a health visitor she actually works in medical fields and she should know better and not ask questions like that.

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Sandra found formula feeding practical and thought it was easier than if she had breastfed.

Age at interview 32

Age at diagnosis 21

Just, you know, making, you know, in advance to feed the baby it was just easier to feed him on the street out and about yeah in front of other people.

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Sandra found the breastfeeding advice very complicated (played by an actor).

Age at interview 32

Age at diagnosis 21

I already read online about breastfeeding triangle online so it’s, what’s suggested to breastfeed to make sure that mum and baby are feeling well and that the baby has not got diarrhoea and mum is exclusively breastfeeding and having read that I thought that sounds very complicated, and also the baby would have to go for blood tests every month and I thought that’s also very difficult for the baby and me. So also, I don’t like any risks I’m kind of risk averse in general, so even if theoretically there is a slight risk in transmission while breastfeeding then I would not sleep at night, I would not be relaxed so we have formula. Yeh formula is great, so yeah. Also, I’m the only one who feed the baby so that’s why I chose the formula feed over breastfeeding.

I think as well if I know I have an option for formula feeding then, and the ease of it also plays a role, but it’s not the primary role. If I was told that there was zero risk in transmission while positive then I would breastfeed. But they can’t say there’s no risk, so I would rather formula feed here plays into role, does that make sense?

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Sandra was diagnosed after a routine health screening before she was a mother (played by an actor).

Age at interview 32

Age at diagnosis 21

When I came to the UK with my mates, I went to the GP just to register for, you know, general health checks and one of the checks they suggested was the do a chlamydia test. Which I did, and it came back positive, and the nurse said everybody positive we were offer HIV test, just as a follow up. Because that was the procedure back in 2010. So, I showed up not thinking absolutely anything. It was not a rapid test it was a test where you have to come back to get the results, so I came back a week or so later, and she said your test came back positive. So, I was very young, a few months into living in the UK I couldn’t believe that I had HIV, I had just started University, it was a big shock.

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Sandra began HIV treatment years after her diagnosis when she was considering getting pregnant.

Age at interview 32

Age at diagnosis 21

So, when I first got married, which was in 2017, I hadn’t really thought about children because I wasn’t on treatment this was not possible, well it would endanger the child so that was not an option for me. So, I waited like to see what to do. I had not started the treatment until 2019. So being a mother was kind of not an option for me. But once I started the treatment then I told the doctors that I had, I wanna get pregnant as soon as I can. That that was my goal.

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