Feeding a baby while living with HIV

I wanted to protect my baby I felt the stage, once you’re undetectable is a small chance that you can pass it on, but for me I decide I don’t want to, I don’t want to take any risks, that’s why I went for bottle.

I have got my sister-in-law who is positive so when I talk to her she’s the one who told me that over there they can breastfeed [for the first three months] and the people that she knows they are all okay, I mean the children, they’re okay after being breastfed but I said I went to the, I don’t know how it works, I mean it might be working for the people and it might not work for others.

Now it’s okay, I’m used to it, but to start with it was a bit challenging and, you know, when you bottle feed you have to prepare the bottle and clean them, clean them out, making the milk, you have to get up in the middle of the night to go and make milk. But it was really hard to start with but things are getting better.

Yeah for first time yeah I can say for taking this decision for formula feeding it was not easy, not to wake up do milk every three hours, two hours, three hours I was supposed to wake up and do milk, yeah it was not easy for me I was struggling until I healed. For a man to do milk, you are supposed to show him how to measure water or to do this but he learnt fast, my husband learnt fast, I was not doing anything by those first days but, you know, I was feeling the tiredness of things just because he was cooking, cleaning the house, doing many things for me then after that looking after babies, you know, so he was supportive, yeah it was okay.

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.

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.

To be honest like I went through a phase where I hated it, because I wake up in the mornin- at night and he, you know like you feel like when you’re breastfeeding you just take your baby and put them in your boobs and you don’t feel the pressure of having to. Because you’re holding a bottle, and you’re tired, you, for me I hated it in the first few months because of that reason. Because at night you couldn’t just have like a night where because with bottle feed you have to be careful. Are they choking? And afterwards you have to, what do you call it? Burp them. Not sure if you breastfeed you burp. But you have to burp them and things like that and it was you know, I hated it.

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.

I’ve not had any actual comments or people kind of asking why I’m formula feeding or yeah or questioning it really. wouldn’t say though that I haven’t felt like not under pressure but I think there is a kind of pressure out there for breastfeeding and I think that there is somebody that I met more recently who’s part of a massive breastfeeding network and promoting breastfeeding and she helps people with it and we were having a conversation and she knew because that I bottle fed baby and she wasn’t asking me or even saying anything, she was actually being more like “but it doesn’t work for everybody and that’s okay.” You could see that she was trying to be like, you know, “as much as I want people to do it and I try and help people to do it, I’m not judging people who are not doing it.”

Yeah, there was not enough people, there was no visitor, baby was not at home, he, baby was in the hospital for three weeks. He came home, coronavirus no visiting, no, no nobody can get close to the baby, so they don’t even know when I’m feeding him. They don’t know somebody was around it when I’m feeding him. When they grow on year and before starting, the family starting, meeting, friends start meeting and they don’t even know if I feed or not, if I bottle feed or if I because before one year he’s not even taking bottle anymore.

So, it didn’t even go there. Like I said, it’s how you, it’s how you prepare yourself, it’s how you move yourself, it’s how you, what you give people that’s what they believe. You don’t have to lie. It’s the way you go around things. Do you understand? Even though there was visitor in, I’m about to feed my baby, I come here “Five mins, I’ll be back.” You don’t know what I came to do.

There’s a way to go around it like I said. Go and feed your baby, want to go and feed your baby, you’re feeding it with bottle feed, you don’t say, ‘oh I don’t feed my baby when people are here, ‘oh give him breast’, ‘oh don’t worry he will take bottle’ and you know he’s taking bottle. He take water at that particular time, you know, if it’s something. It was only one of a friend that always came here, it was close to my house and said, “Oh my God I’ve never seen you breastfeed this baby,”’ and I said “Oh my God do you wanna see my breast?” It was just a joke, I say, “You wanna see my breast

or something? This is my breast.” I pulled down my breast. She was laughing and we just talk about it and that’s it and I even give it to baby, baby was so small then. I give it baby and baby didn’t want it, didn’t take it [laughs]. So, I said, “You see, I’m not selfish with him”, but he will just take it because I didn’t teach him, he wasn’t at home, he was in the hospital.

You know, the society we live in most people around me like my church members, they wonder why I don’t breastfeed. Anyway, I don’t really keep friends because I don’t want people to, you know, to keep asking me a lot of questions, what if they keep prying, they kept asking me why don’t you breastfeed and since I don’t want, I don’t want to disclose my status with them I just told one or two person that I have this condition that whenever I’m pregnant and that for real this black stuff that affects me, my whole boobs, my nipple area is very black and falling off so I can’t breastfeed my baby so it’s such, yeah so I just have to put up that story.

That’s the reason why I bottle feed. And bottle feeding, formula feeding, yeah, it’s really good and it’s helping me so far so good so and I missed out breastfeeding, but all the same I don’t have any reason to complain, I’m just grateful to God that at least I’m able to have kids and for my feed them and they’re doing well so that’s it.

So, yeah it was like last time around, it was much more I would go and meet the support worker and collect the milk whether it be from the office itself or sometimes it would be from the clinic if we were kind of coincided at the time. And that was every four weeks or every month, you’d pick up four cartons of formula. This time around because of Covid, it’s not been as easy to do that and then obviously we went into lockdown at the end of last year so milk, she’s actually been getting it delivered to me this time around. I did meet up with her like two or three times kind of in the period just after baby was born and yeah I met up with her a couple of times at, at HIV clinic to hand it over but then since it’s just been getting posted out to me.

She did, now, now that I come to think of it. When I first went back, when I first met the support worker the first time around, she did ask me if I wanted to get involved with peer support stuff and do get involved with the charity work that they do but because my partner and I don’t, we’re not, we’re got very few people that know about our diagnosis, it’s like very close family and a couple of friends on each side. I decided not to just because yeah, not that you don’t know who you’re gonna meet but I also work in the voluntary sector so I’m much more likely to see people I know, so that was another reason I didn’t really get involved in the charity side of things as well so yeah.

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.

So when I was home, and I was having this difficulty with the GP, I had to phone them, because she had given me her number and said anywhere you have any problems, just call me. And I did, when I did she phoned, she said “Okay, leave it with me I’ll call you a GP” and you know, it was a, it was a team of people. I spoke with several team of people in that office, I don’t know where. They helped me eventually, the GP had told me It’s time to take my milk. It was a struggle, it was a struggle. Because the GP wanted to prove, proof of who told you, you can do that, and I had to like, lucky I had the number. If I didn’t, I don’t know what I was going to do.

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.

Oh, yes for, until the baby is a year so you can imagine what it would have been like without support, you know, if there was no support, I bet maybe most of us would stick to breastfeeding, you know.

Yeah sure so the boys unfortunately had really bad reflux since birth really probably because of their prematurity and so we not in the hospital, well I say hospital, when we came home we quickly transitioned from the premature formula onto an anti-reflux formula which is fairly costly at £14 a tub. So, we’ve just been buying it but our local, well my clinic offer, so they either offer a years’ worth of formula you know, bought by them or I think it was three months of donor breastmilk per baby. So the formula they have access to is a sort of standard formula so had the boys been able to tolerate that formula we would have got a years’ worth for both babies from them which is just incredible however because they’re on the anti-reflux formula and it’s so much more expensive even at cost price to them they managed to get us enough, I think it lasted a couple of months which, you know, is, it’s still a big chunk of money that they used to give us some formula. So that was, that was really nice and you know, as I said we just bought the rest.