Amy

Age at interview: 31

Age at diagnosis: 29

Brief Outline:

Amy (played by an actor) was diagnosed with HIV shortly before she became pregnant with her youngest child who is now one-year-old. Amy decided to formula feed her baby, but wishes she had been better informed about her infant feeding choices.

Background:

Amy is in a long-term relationship and has two children, a 12 year old child, and a one-year-old baby. She has taken a period out of work due to health reasons.

More about me...

Amy was diagnosed with HIV shortly before she became pregnant with her second child. Amy had experienced HIV symptoms for a number of years but had not been offered an HIV test. Since her HIV diagnosis came very late, she suffered several health problems which still affect her now.

Amy and her partner had been trying to conceive but had not been successful. Shortly after starting to take her HIV medication she became pregnant. Amy believes that her body had been too tired before that point for her to get pregnant.

Amy had breastfed her older child, but formula fed her new baby. Her medical team had not informed her that breastfeeding was even an option, even though she had an undetectable viral load for several months before she gave birth. Looking back, she would have liked to try breastfeeding. Amy’s partner is Black African, and she expected that her partner’s family would ask her why she was not breastfeeding, so prepared different strategies and explanations for it.

Amy was not offered free formula milk when she had her baby. Her health problems had prevented her from working, and the cost of formula milk had been a financial strain for them.

Amy talked about her experiences of facing HIV-related stigma from medical staff. She believes she was not offered an HIV test sooner because of stereotypes about the kinds of people who are more likely to have HIV. She also felt judged by medical staff when she was on the maternity ward. Overall, she has a mistrust for healthcare professionals because of such experiences.

Amy had advanced HIV symptoms years before she was offered an HIV test.

I was, I thought I had Lupus like my sister that’s what my symptoms were and, and then back on, they wasn’t, I’d had the five years I’d had funny bloods and lots of really like symptoms and I was pushing and pushing and pushing for help they weren’t referring me to like rheumatology or haematology, nothing and then I pushed for the referral and then straight away they done a test and then I was called in and then I was told, so they were, once I was referred they were straight on it but the GP, I mean now in hindsight obviously the symptoms and the what was going on is very clear that, you know, there was cause to kind of look into it a lot earlier it’s, yeah I think I’ve got like a three page, I wrote down all of the blood tests, it was three pages of A4 of me going in saying I’m tired, I’m this, I’m this and then blood test after blood test after blood test and nothing was done at all. So yeah, it’s quite disheartening when I could have just been well this whole time like I am physically well now, I didn’t need to get to that point where I was, you know, in bed all day in pain all that kind of stuff. I got myself into debt obviously because I wasn’t focussed on paying bills and all of that kind of stuff, so it’s that, it’s the coming back out of that that is now frustrating because I’m in a worse place than if they’d just told me and I’d been able to manage my life a bit more.

When Amy was finally diagnosed, she did not get the results straight away.

I’d been tested in the May and I hadn’t had a result, so to get the diagnosis in October I was like “hold on” and then my consultant said “no that was positive”. So that was, I mean it’s a difficult diagnosis initially anyway, but then to find that out it just made it even more especially that I’d been asking for help for so long, it was very, yeah, quite a, it took all my faith out of like medical staff and things like that it just, yeah it didn’t make it easy, it made a difficult situation much harder I think. Yeah, so not the best.

Amy did not know about the latest guidelines (played by an actor).

I was just made to believe that breastfeeding was a high risk of transmission and that it was, you know, just a no go. It was an option if I was willing to risk that kinda thing, which obviously I wouldn't so [pause] I didn't know that there was an option to do it in a safer way, especially as I was undetectable way before I gave birth.

Amy's baby is of African heritage and suspected her partner’s family would ask her why she was not breastfeeding (played by an actor).

It’s a very natural thing to just want to feed the baby and obviously in the African community you need to breastfeed so it was preparing myself for the questions of “why aren’t you breastfeeding”, “why are you formula feeding”, and having a story ready that was my big like thing of having a story to just shut everybody up and leave me alone kind of thing because obviously we’re not gonna be talking about the diagnosis with the family and stuff like that. I remember the build up to having the baby I was panicking about those questions, and they do like to question you a lot yeah.

Regardless of my feelings of wanting to breast feed I, I couldn’t outweigh that risk potentially to her. It was kind of a non-decision really it’s just one that’s kind of automatically, obviously if I was in a position where I was in the country where I didn’t have access to clean things and I couldn’t formula feed safely that’s a different conversation but I, yeah I didn’t feel like it was a choice, it was like just wrap your head around it and get on with it kind of thing.

Amy was not offered free formula which was a struggle for her and her family (played by an actor).

It takes a while for the student finance stuff to sort itself out and then for Universal Credit to admit that I don’t have any funds for you until they got the notification. So I had no access to any money for about three or four months and we were nearly made homeless because obviously I couldn’t pay rent we couldn’t buy food we relied on charities for food, it was hard and obviously then trying to get ready for a baby plus then obviously getting her formula and, and things like that it, yeah it would have been beneficial to know that that was taken care of given that it wasn’t really my choice. It’s nice to know there are things out there like that but there’s just nothing around this area for any kind of support at all. I think it’s more in London which I’m outside of, so yeah, I think they should extend that a little bit.

Amy thinks that there should be more training for all medical professionals on how to deliver care to people with HIV.

I think it would be nice if there were more training for all medical professionals regardless of, you know, what field they’re in that they could obviously you can come into contact with HIV positive people in any kind of field it just would be nice to have a bit more training for them on some facts and how to, what to do what not to do, what to say.

Amy felt that if she had fit the perceived stereotype of a person with HIV she would have been tested quicker.

But it’s, yeah, I think being a woman they didn’t listen to me, you’re not taken seriously enough, I think again if I, if I fit their perceived stereotype of what a HIV positive person was, I may have got the test quicker, I think. So yeah, I think the medical community has got a lot of, or the world has got a lot of changing to do [laughs]. That’s a whole other conversation [laughs].

Amy feels there needs to be greater mental health support for newly diagnosed pregnant women (played by an actor).

I think there should be something out there a bit more until they catch up with changing the perception a bit there is always gonna be that shock factor and that adjustment period and I was, I was shocked to find that there was nothing, I don’t know if that’s the same in every area but there’s nothing here it’s just “here’s your diagnosis and off you go home, bye”. So yeah I think that’s another thing that they should possibly look into to help, especially mothers as well, especially pregnant women newly diagnosed if it is, it’s, there’s not really any kind of support as far as, I think our whole mental health system is a bit knackered in this country anyway but certainly yeah there’s lots of holes in the system I think with the care of HIV positive people especially pregnant women or new mums. Yeah so, a lot could be different, but we’ll get there one day hopefully.