Emma

Age at interview: 42

Age at diagnosis: 37

Brief Outline:

To remove all risk of HIV transmission, Emma formula fed her six-month-old baby and intends to formula feed her unborn baby.

Background:

Emma is White British and in a relationship. She has two children, aged 22 years old, and a six-month-old baby, and is currently pregnant.

More about me...

Emma was diagnosed with HIV in 2016. She was in an abusive relationship with her ex-husband and although she had been ill for some time, he had prevented her from going to the GP. When she was eventually tested and received her HIV diagnosis, her doctors told her that she could live a normal healthy life. She learned later that her ex-husband had already been diagnosed with HIV. When they divorced, he disclosed her HIV diagnosis to other people.

Emma’s current partner does not have HIV and is supportive of her. Emma was shocked and panicked when she found out she was pregnant, as she had thought that HIV meant she could no longer have babies. Her medical team reassured her that she and her baby would be okay. They advised her to formula feed to remove all risk of HIV transmission, which she did, and this is how she is planning to feed her unborn baby as well. She did not seek out information from elsewhere because she felt informed by the medical team.

Emma’s (second) baby was born premature and delivered by caesarean section due to complications unrelated to HIV. For a period of time, her baby was on a high dependency unit. While she was in the maternity ward, Emma felt judged by maternity staff for not breastfeeding and when she explained why, she felt judged for having HIV.

Emma is keenly aware of HIV stigma, and when friends and family asked her why she was not breastfeeding, she told them it was because she was anaemic.

Emma breastfed her eldest child (born before her HIV diagnosis), so was worried about being able to bottle feed at first, but things worked out fine. She received sterilising equipment and bottles, and due to her baby’s delicate health she also received prescription formula milk. Emma finds formula feeding is good because she can share feeding responsibilities with her partner.

Emma was not sure if she would be able to have more children following her diagnosis, it took her a while to accept that she could.

They told me that it was possible nowadays to live a, a normal life and was just to take, you could just take one tablet a day and it would be, but I didn’t, it didn’t penetrate. It took a while for me to actually realise, it was only after I talked to a nurse, I’d see a lot that I gradually came to understand, I mean she said, "Oh you’ll be able to have children, you’ll be able to", and I, I just didn’t believe her, I was still used to all the things that I’d seen growing up in the ‘80’s… I was going around cleaning things, terrified that I’d give it to my son off a toilet seat or a cup or things like that and it took a long time for me to realise that that wasn’t the case.

Emma thought most staff were brilliant, but some in the high dependency unit treated her differently and stayed away from her and her partner.

I mean the nurses and the doctors were absolutely brilliant to be honest it was just like a normal pregnancy apart from. I got high blood pressure so I had to have an emergency caesarean. The only thing I would say is after he was born he was in HDU and we were treated differently to all the other parents, definitely, seeing them kind of looking at us when they realised the HIV and kind of looking at us a little bit more, and I know they talked about us because I heard them talking about other parents so I know they talked about us, and people really gave us a wide berth, so that wasn’t great.

So, these were like nurses, doctors, the healthcare providers?

Not, not the doctors but the nurses, they was only like 20 year olds, you know what I mean, little girls, and some of them were really great but then like I say, some of them, you can just tell that they, as soon as they read the notes and read the status, obviously [name] had to have my baby had to have medication and you could see as soon as they read the notes, they’d look at us and they’d start looking up and down our arms for tracks….silly little things, but they would do it and they’d start treating you different for a few days until they realised things. I mean we’d explain the situation and they’d be okay.

Emma was sad not to breastfeed but decided she didn’t want to take any risks. She felt judged by staff who kept pressuring her about breastfeeding.

I was sad because I wanted to breastfeed again but then I thought well it’s my choice and I don’t want to give any risk at all to my baby. Plenty of people bottle feed the only thing I will say is in a hospital there was a lot of nurses and doctors kept pressuring me into: “why aren’t you breastfeeding, why aren’t you breastfeeding, breastfeeding is best” and I had to explain to them over and over again why I couldn’t. Which was quite hard actually because they kind of judge you almost for not trying and then until they realise why you couldn’t. But you feel bad enough anyway not being able to do it without that added pressure.

While Emma was on the maternity ward, her medical team showed her how to formula feed.

At first, I was terrified because I’d never done it before, ever, and I thought I was gonna get it all wrong and, it was just scary but after a couple of days yeah it just came naturally, it was absolutely fine.

That’s really good to hear were you given like any support on how to do it or any advice?

Yeah in the hospital, some of the nurses came round and showed me what to do, yeah told me how to do it bits and bobs.