Feeding a baby while living with HIV

I breastfed my son and was all geared up to breastfeed my next child and they were like, “Er, no you’re not breastfeeding, we have no research on this. You cannot. You’ll end up giving your baby HIV.” There was a lot of negative advice so they said, “Look you can’t do it.” I could have a natural birth, but I couldn’t breastfeed and they gave me the statistics on the natural versus caesarean. I could choose both, whichever. But my mum was like, “Have a caesarean it seems safer de de de.”  So I had the caesarean. I would never have a caesarean again, it’s horrible. I hate it.

And the breastfeeding, it broke my heart. I really wanted to breastfeed her. I didn’t think I was gonna bond. They said, “Well we’ll give you a pill as soon as the baby’s born that will soak up the milk, so you won’t have that as an issue when they cry and everything else.” It didn’t work on me. I had to take it like three times. Then every time she cried, I had like these patches, so that made it even worse. For a little while I was like, ‘oh I might as well just do it’ but I didn’t, I never, it was, because it made me think that I could end up killing my child, so I didn’t.

I was shocked at the difference in the information that was being provided and it just, it for me flipped it, it flipped everything on its head because the decision was so quick last time, you know you almost thought well it worked last time can we just, you know, stick with the same process and now we had to make a, a decision, you know, completely against what we did the first time round. So I like a winning formula and the first time was good and we think, you know, why change it. But it’s, yeah, I think once I got like to grips with the information that was being provided and started to look into it and knew, you know, the risks that are still involved, however, you know, the ways of preventing them were, they were clearer and yeah I think it’s very different this time round.

I think I remember my doctor sort of asking if I’d thought about it. And I was very much like no, not doing it, no way. I think I was, I was probably more headstrong and I just wasn’t, I wasn’t even considering it because, for me, at that time,  the thought and the risk of transmission like outweighed any sort of desire I had and I was already like, you know, paranoid first mum and I didn’t really know what I was doing. Didn’t know how this would be and I was quite like okay with that decision.

Now obviously I’m pregnant again and I think guidelines, how I previously read the guidelines as to when I read them now, I didn’t—I think I am probably reading the same guidelines and there’s more behind it. My opinion has changed now. Whereas obviously before I was dead like certain that I would not now I’m actually considering it like quite shocking my change in mind-set considering it for this baby that I’m pregnant with. So and that’s been a two year yeah, two year gap.

I would say that like, my first it was because when you are HIV, when you are living with HIV already before you get pregnant, I think one is different because you are in it already and then you, you probably know a lot about it so that one is different like compared to my case, I wasn’t, I didn’t know I was having, I have it, HIV. So I only got to know when I was pregnant so it was like a, I didn’t know much. I thought to me the best thing to do is not breastfeed my baby because I know that will be the safest but if like I was living with this already before I getting pregnant, I would have known that I, it was actually very good. They did explain to me but it’s like I didn’t want to hear. Yeah, they did explain but if I was like in it already that would have been different.

I think that’s a really good thing that people are being encouraged to do it if they can. I don’t think it would have impacted our decision if I had known that. I don’t think it would have impacted the decision having done it once the way that we did it and felt that that was safe and it was good. But yeah I do think it’s good that it’s an encouragement for new mums. I think if there’s more and more research and support to show the risks involved or the lack of risk involved I think that’s the thing I kind of needed kind of more reassurance for me to go down that route. But yeah, I think it’s definitely a good thing.

Because I have three children before this and I never bother about breastfeeding and they, they all come out well. They’re not sick, they don’t have any pain at all. I don’t take them to hospital, they don’t even have colds, they hardly have cold. They’re very strong, So, anybody out there that is thinking that because of their status they won’t, they won’t breastfeed this child and they get sick and worried about, no, no, no you don’t need that, you don’t just need that. All you need to do is focus on your baby, how to look after your baby best breast milk is good, very good but when you don’t have it, you don’t have it.

It’s good, I can say it’s good but when I said ‘it’s not gonna affect your child’ and all those things, and yet things can happen, mistakes can happen. Anyway, you know, that mistakes can happen, don’t just go it if there is another way to go around it, you understand? Breastfeeding is not, is not doing everything. The baby, there are children that, the mother that gave birth to them died. There’s things- that’s ways to go round this, what that the government said yes, if you want to do it, do it, it all depends on you. But for me, I don’t want any things, any single thing that would come from me to my child, no. No that does not mean, if I don’t feed my child that does not mean that I don’t love him. I love him so much, you can’t love my child more than I do. Any sensible woman, any sensible mum that has senses that is intact. Nobody on earth that will love her child more than the lady that gave birth – the mother, you know what I mean so they can’t lie about it, if I breastfeed this child, its fine if you can’t do it.

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.

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.

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?

Although, the rationale was that in Africa there’s less cleaner waters so it’s much more safer to breastfeed than to bottle feed. So, I was like, “is it because of water or is it because the risks of transmission is low anyway?” so I was like, “Can I not still, even though there’s no risk of, you know, even though there’s clean water available-?”

I said, “So, why are them examples so concerned of the social aspects?’ What about the physiological aspect of it? Why are they so narrowed down? Why is not being talked about?’ And that’s the few questions I’ve asked them and clearly no-one, no-one at all has answers because I even asked one of the doctors, “Even this breastmilk can be analysed in the laboratory. Do we have any laboratory studies?” Just like we analyse blood samples that analyse human milk from affected mothers, even mothers who have high viral load are compared with women who have low viral, undetectable viral load. What’s the difference?” and the doctor said, Oh he hasn’t researched to see if there are laboratory studies done, and I was like, ‘okay so the information you provided where did it coming from?’

They said, “It was guideline.” I was like, “What is the guideline based on? What informs the guideline?”

And what answers did you get?

They didn’t give me answer, you know, I think like I said maybe because I’m a black person they don’t understand that I have research understanding, I have understanding of how some of these things work. Most policies are informed by research and research can be outdated after some time when we have new knowledge and if there is no new knowledge you know you’re interpreting the old knowledge with caution. Maybe something may have changed so when I ask them questions, they treat it like, “Oh she doesn’t have enough knowledge, or she may not understand.”

I think the main reason why we don’t have that evidence about breastfeeding is because it’s not a man who is breastfeeding. They’d wanna know.

I think all the initial advice was kind of what doctors are required to do, just play ultimate safe, all of them were like, you know, “you shouldn’t, but you can.” They were like, you know, yeah so really like, “it’s really advised that you don’t and it, and they still say that they really advise that you don’t, but you can if you want”. And again someone with HIV who was all perfect and pure once upon a time it’s really lovely to hear that you can if you want. And just that kind of support that is offered and encouragement and positivity, you know, the baby, I feel like the doctor’s obliged to say “no, no, no, no you really probably shouldn’t” because that’s part of probably just the NHS isn’t it, they’ve always got to advise the better course of health or action or something like that.