Kay

Age at interview: 31

Age at diagnosis: 23

Brief Outline:

Kay wants to breastfeed her baby for the health benefits for the baby and for herself.

Background:

Kay describes her ethnicity as White Other and is currently single. She is studying for a masters degree and is pregnant for the first time.

More about me...

Kay was diagnosed with HIV in 2012/13. She grew up in the US and lived in a number of countries before settling to study and work in the UK. Kay’s pregnancy was unexpected and she is no longer together with the father of the child. She plans to breastfeed because she believes that there are health benefits for her baby and herself. Kay also said that the Covid-19 pandemic and working remotely would make it easier to exclusively breastfeed from home.

Kay thinks the current UK ‘infant feeding and HIV’ guidelines and resources are not “human centred”. She feels they do not sufficiently take into account the realities of living with HIV and put too much pressure and responsibility on the mother to prevent HIV transmission to their babies.

Kay has felt supported by her medical team during her pregnancy. She intends to remain in the UK while she is breastfeeding, because breastfeeding while living with HIV is criminalised in the US state that she is from. One of the issues that concerns her about going back to the US is the possibility that the father of her baby may alert authorities about her intention to breastfeed. Meanwhile, her medical team in the UK has reassured her they will support her and advocate on her behalf if any issues ever came up.

Kay was having a difficult pregnancy and was concerned about her mental health.

Just being sick all the time dealing with like a very traumatic situation and like an interpersonal situation like depression and having a positive outlook has been difficult for me. And I figure it would be difficult for anyone in this position, like I’m not holding like it would be impossible for me to be like I’m a really perfectly cheery person who’s not having, like I’m having like strong fears about post-partum, like this process has just been so hard for me. And the last thing and the thing that I’m most scared of is that after doing this full process for nine months I am going to have an infant that doesn’t feel like mine. And like depression during pregnancy is, can be quite correlative to risk of post-partum and breastfeeding is one mechanism, it’s not the only one but breastfeeding does reduce risk of post-partum and I am much more concerned about the risk and the impact of post-partum and if I have post-partum and I feel like this child that I like fought to have and like, you know, went through a very difficult pregnancy for like if for the first year she doesn’t even feel like mine. I feel like I’m just ghosting my own body. I am so much more worried about the impact that would have on her.

I’m just much more worried about the impact that would have on her versus the very, very, very, very miniscule risk that is transmission.

Kay had a difficult pregnancy with severe nausea.

Yes, it’s been very difficult I was diagnosed with severe nausea and vomiting, somewhere towards the end of the first trimester I was put on like any and every anti-nausea medication that there was. It’s definitely improved in the last like six weeks, but it was a very psychologically, physically trying four months, I think women, women for whatever reason, I’m a very well-educated woman who had no idea that one in three percent of the population while pregnant can become like horrifically sick so we obviously have some messaging issues around pregnancy that they only wanna talk about the more positive aspects of it. But other than that, which obviously was like a big thing it’s been, you know, she’s healthy so that’s, that’s great like it’s mostly me she’s a very efficient parasite and I am probably the nutritionally deprived one but that’s okay [laughs].

Kay was pleased with how her HIV clinicians explained all the information in a supportive and non-judgemental way.

So they’re quite supportive, like to me they have to say what current policy is which is that in the UK they recommend that women do not breastfeed if they are HIV positive and they’ve said that to me but they also say that if you chose to breastfeed we will support you in any way shape or form possible. So, I feel like to me it’s almost like they were like we have to say this policy thing because this is technically the policy but like we also really wanna support you so like if that’s not what you wanna do we can completely respect that and there is zero judgement and we wanna make like a medically feasible thing for you where you feel like you have support.

Pregnant at the time, Kay shared the heavy burden of responsibility carried by mothers with HIV to not pass HIV to their infants.

I am just worried that like, well I get scared that, you know, there will be the one case where like the undetectable mother passes the virus on to her new born infant and then what ends up happening is that every mother regardless of how negligible that risk is will then internalise the fact that like this choice could still somehow lead to that because we just don’t have the mountains of data that would make me feel like that I can still make a moral choice when it comes to like sexual activity versus breast. And I know that like I think from many, many mothers they would hold themselves to like such a high, like I feel like they’d be punishing themselves for the rest of their life if that happened, you know, so yeah…But I still think the policy is good I just think that it’s harder for mothers and to like collect this data because it, it does feel like there is just, the stakes are really high and so if there is even one case that flips by, you know, that could have like a really big psychological impact on the women as well.

Kay felt the BHIVA guidelines are not human centred and put mothers living with HIV under a lot of pressure.

In my opinion, the current triangle policy is not human-centered. To expect that HIV-positive moms - who are already under a great degree of pressure and scrutiny to ensure they do not pass the virus during pregnancy - exclusively breastfeed for 6 months without cracked nipples, mastitis, gastrointestinal issues for either mother or baby, supply failure, or other host of potential roadblocks for a reduction in risk that can't really be quantified and could be negligible, is not an ideal policy response. It piles on the mother, and only accounts for the costs of breastfeeding via transmission risks, without also factoring in benefits from a mental health or bonding, immunity, or financial standpoint. To give some last-mile perspective, according to the specialist in my hospital, of the 20 HIV positive mothers who have attempted to breastfeed, only 2 (or 10 percent) were able to get to the six month goal post with exclusive feeding. The guidelines as they currently stand do not really empower HIV positive women, they guilt and suffocate them.

Kay found the logistics of breastfeeding easier when Covid-19 made it possible for her to work from home.

Covid because of the way that it had been changing structures around work arrangements was actually something I thought about when it came to keeping like going through with the pregnancy because it actually felt like an opportune time just given that I’m like such a professionally orientated person so it’s maybe one of the few times in my life where I was like complete location flexibility which also would translate to feeding because the women that I talked to, a lot of women ended up giving up when they were working because it was just so difficult to do, breast feeding and work in a professional job were you had to be in an office, like 9 to 5.

Just like basic things like if you were breast feeding and trying to interact with like larger society would probably feel like pretty uncomfortable and/or embarrassing, so yeah. So, it’s like the working from home definitely makes it easier to capacitate breastfeeding.