Sasha

Age at interview: 32

Age at diagnosis: 5

Brief Outline:

Sasha had formula fed her older children. She decided to formula feed her new baby as well due to a lack of UK specific data around HIV transmission through breastmilk.

Background:

Sasha is White British and works for a public sector health organisation. She is engaged to her partner, and has two older children and an 8-month-old baby.

More about me...

Sasha was diagnosed with HIV in childhood, age 5 years, but was not told her HIV status until she was a teenager. She believes she was born with HIV and that her mother had died due to AIDS related complications.

When Sasha had her two older children, all mothers living with HIV in the UK were advised to formula feed. She recalled that the entire pregnancy, birth and post-birth period were closely controlled by medical staff, with no choices offered to parents at any point.

This time around Sasha had wanted to breastfeed her baby. She was aware of the UK guidelines about infant feeding and HIV and had discussed breastfeeding with her HIV doctors. Sasha also does some work with HIV care and advocacy groups and sought advice within and beyond her HIV clinic, but ultimately she decided to formula feed her baby in order to remove all risk of transmission. She was also put off by the lack of research into HIV transmission via breastfeeding, particularly in high income countries.

Sasha often finds herself in a position where she has to educate others about how HIV is now a treatable, manageable condition, which she finds draining. For example, a midwife had told her that she would learn a lot from Sasha because she had never cared for a mother living with HIV before. Sasha is open about her HIV status, and when asked during a mum and baby group why she was not breastfeeding, she explained that it was due to her HIV status.

Sasha was diagnosed as a child, before there was effective treatment.

I was obviously born with HIV and diagnosed at five didn’t actually find out until I was 16 and then I got pregnant at 17 when treatment and life expectancy still wasn’t quite known as much as it is now.

Sasha’s first pregnancy 15 years ago was highly controlled and she was given no options regarding the birth or feeding.

My first pregnancy, which he’s nearly 15 now, but at the time it was very controlled the pregnancy. It was very much you can’t have a natural birth, you can’t breastfeed, you’ve got to do this, you have to do that, you have to have them four weeks early blah, blah, blah. Ao that was a very difficult time especially being young as well and not knowing whether I was actually gonna survive being a parent for long and how long it would be that I would be alive for because we still didn’t have the life expectancy that we do today.

Sasha wanted information from her maternity doctor about breastfeeding but was continually referred back to her HIV consultant.

So, the first thing I wanted to talk about was breastfeeding, so I’ve always been told in the past that breastfeeding is dangerous that you can’t breastfeed even when undetectable blah de blah de blah, but then because of all the stuff that I had done with, working with HIV I now know we can breastfeed with HIV but the research into it isn’t existent in the UK. So, my thing was I was writing all my questions down I was going to the maternity doctor consultant and saying right I would like to breastfeed, she was like you can breastfeed, I was like fab, so what do I have to do if I breastfeed? She said you need to speak to your HIV consultant, right okay. Spoke to the midwife as well kind of got the same response, “I don’t know if you can breastfeed no-one really, we don’t really know much about HIV we leave that up to the consultants to discuss that with you, then kind of we learn with you because we don’t see many HIV patients” and I said, “that’s totally understandable if you don’t see HIV patients how are you meant to know about it” but then this comes into the criteria of why are you not being taught about it.

Sasha was confused by different information about whether she should bring in her own formula or whether she would get it at hospital for free.

No-one, one person was saying oh you need to provide the milk and one person was saying you don’t so I said well do I need to provide the milk or don’t I need to provide the milk so which one is it, because with [daughter] they gave it to me on the ward. And then my friends were like yeah, yeah you have to take milk with you, I was like but I’ve never had to take the milk in and if I’m not allowed to breastfeed then that’s not my fault, so the ward should be providing the milk while you’re on the ward. So, the consultant was saying “yeah, yeah we give you milk” and then the midwife’s and that said “no, no you have to take it”. So I was just like I’ll pack a box just in case, so I packed a box and actually they did give me milk because I had my own and I used my own at first but because they kept me in longer than I expected, no they didn’t keep me longer than expected - no-one could answer the question, so I’d only taken one box and [fiancé] wasn’t allowed back in the ward, he was allowed in there for one hour, 9 ‘o’ clock in the morning but he was not allowed in the ward, so he couldn’t even bring me supplies. So then I said to them I’ve got no milk left, they said, “oh it’s alright we’ve got loads, I was like oh so you don’t have to bring milk in”, she says “no, what made you think that”, I was like well because nobody knew whether you had to bring milk or not”, I was like “I don’t know what I’m meant to do”. So, there’s a lot, there’s still quite a lot of issues within the feeding world and with just having a baby in general.

Sasha felt discussions on feeding options should happen at 20-25 weeks of the pregnancy.

Can I ask you a bit because I found it really interesting you were saying about actually doctors, the healthcare team needs to have these conversations about feeding options, when do you think that that should happen and how?

I think once baby is established that the pregnancy is going well so we have obviously had our 12 week scans which tells us that the baby’s there and it, you know, that you’re three months pregnant that’s when people tell you, you don’t really tell people that they’re pregnant because that’s usually when you find out if the pregnancy has gone ahead if the pregnancy hasn’t, if there’s any issues. Obviously, however, you do sometimes get issues between 12 weeks and 20 weeks because on your 20 week scan other things can arise like heart problems, spina bifida and all these things so I think for the mother to actually absorb it and understand it I think 20 weeks to 25 weeks because most babies are born from 28 up that survive are usually 28-40 so at least if they’re having a I think around between 25, 28- 30 weeks they’re ready.

Sasha guided the conversation on breastfeeding with her doctors.

And can I ask you who started the conversation, were you told that this could be an option or was it you that was saying “actually, I wanna consider breastfeeding, what are my options”, who started it?

It was me I wasn’t even asked about it, it was me that was going in with lists, going “right, I want to breastfeed but obviously even though I’ve been to the medical conferences we don’t have enough research on this”. And what about if I just did the first week, what about if I just did this, what about if I did that, the other thing that happened afterwards and as I say the clinic didn’t actually guide it all it was me that guided it.