Feeding a baby while living with HIV

When I compare the two experiences, I was better, I don’t know how to put it, but I bonded better and quicker with my son than I did with my daughter.

Oh, I loved breastfeeding, I loved it. I loved every second of it. I did not find it difficult; I mean, at times it was demanding but I really, it, I just loved every second of it to be honest, you know, I did not find it challenging. I had enough breast milk supply at all times, you know, I loved it and my son loved it too.

Oh it was, I mean I didn’t, I didn’t expect to kind of warm to it the way I did, I mean I was thinking it was kind of difficult at the beginning trying to, cos it was my first time I didn’t know what I was doing but once I’d got the latch right and stuff I kind of, I completely loved it, was so nice to have that bond with my son.

I would advise people not to breastfeed really.

Okay, why’s that?

Because it’s really stressful. You might be 100% sure that you’re taking your medica-, to me it was really stressful. I was living on stressful. I was living in pressure, you know, stressful. Because, even at my age, I knew I was taking my medication every day, yeah? I wasn’t feeding baby another food, even the water or anything. But it wasn’t easy. I did not have a clear mind you know, when I go for my tests. That day I won’t sleep. I don’t know other people how they have but to me I was just living that, this whole thing. Even though you know everything is perfect, but I had that question mark. If there’s one hundred percent sure that you know, HIV are just you know, I used to ask myself, where is the HIV in the body? Is it in the blood or, I don’t know, I wish you could speak my language I could explain a bit more better you know.

You live, honestly and you’ve got your baby to live in stress like that, and you’ve got other things again in your mind. It’s too much. I would advise if it’s really possible, I would advise people not to breastfeed. It’s not safe at all. You’re not to stay with a baby 24 hours to make sure that no one’s putting, even a tiny biscuit or, you know what I mean?

He had jaundice and the lack of awareness and the nurses who they obviously are not HIV trained background, they did not know how to support me. I did call there was a group there was a lady that gave me the number as well, they also deal with people with HIV and give support in terms of surrounding breastfeeding. I remember that evening I called them, but maybe they were out of office, if they could support me at that time I really, I didn’t want to do it

The first day I breastfed, it was good like I said I was really happy doing it and I was just caught unaware. The decision was just instant, “he needs this amount of fluid” you know, and my milk is not producing it like give me a chance, it didn’t make no difference though, for you to know that it wasn’t necessary because despite the formula milk it still didn’t get rid of the jaundice so I had to stay there again, so the problem was nothing to do with breast milk or anything like that because it still didn’t go, until they did further treatment and by that time the breast milk was gushing out, so the support was really poor.

I’m happy that he’s healthy you know, but what can you do, it didn’t happen the jaundice messed up everything that they would have at least supported me, you know, because just the following morning the breasts were full of milk, because the reason why he was put on the other milk is because they said I wasn’t bringing milk enough but again, that doesn’t even make sense because I think the first day or so the milk sometimes doesn’t come out, so long as you have the liquid gold, so the following day it was obviously a lot, but it was too late because they said that I couldn’t do combination, so once he was started on that one, that’s it, you can’t do both, so I had to just concentrate on the other one.

Then she was having donor breast milk in the hospital, so I had to give consent for that because it’s something they ask me for because she need nutrients and to put on weight, so they were weighing every option. At that stage, when she was so they asked me, I gave my consent for it. I know how I felt that day the very moment I gave my consent for that. I felt that I would I felt that I disappointed, I’m disappointed in myself like I did I caused this for her. She’s not meant to go through all of that. And this, I know it’s something that you can’t, you can’t avoid, some of these things around you can’t avoid it, even if you can’t avoid it but they are just ways you can get them without me knowing that this is the situation.

So, I felt really disappointed in myself that I put her through this, and I let her go through this because when you see other mummies there expressing and taking it for their babies, put their stickers name on them, put them in the freezer and for me I can’t do it. They had to use a donor one for her, which really breaks me down like. It really breaks me down because that let say there was no virus or anything. Even if it’s three months, I’ll be able to give it to her for three months actually I know my mind is at peace she has something from me for that three months, but that never happened. So, me giving my consent for the donor one was really now heart breaking for me but, at the end of the day, I did it, but she was not reacting to it properly, what they wanted her, so they took her off that one and then started giving her some other form of nutrient.

It’s like I choose the wrong thing to do, it was not wrong to do, and I, you know when we’ve got children and we’ve got an appointment every month with the babies to see if they’ve got the virus. I mean I was breastfeeding and the baby was fine so what was the problem? Because to be honest I’m taking my tablets in time, I take my tablets I give baby the medicine, the way they said, I follow all the instructions, so what’s the problem there?

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.

My first daughter got discharged and she was fine and I thought, ‘okay let’s, I mean if she’s done it and she is fine then there should be no problem with my second baby.’ The only reservation I had, and I still do have and I just have get through it is the injections once a month that they have to get blood test.

I am considering taking my, this one off a bit earlier because she’s not taking to the blood tests as easy as my first daughter was so that’s the only reservation they have to get pricked every, once a month and it’s not nice to watch.

Can you just share like your experience because I know it was quite difficult?

Yeah it what happened I think it was, it was that I went over due and then my blood pressure was my blood pressure was high, I was taken to hospital for a week and then I think everything the mood was when I was trying to breastfeed like but, I don’t know, I don’t know, I don’t how long I’m supposed to wait for the breast to produce the milk with no problem, but I did struggle to express and my breast were painful at the point they started bleeding and that was it I just thought no, now I can see the blood I’m not doing this yeah.

Yeah.

And were you worried about like HIV transmission specifically?

Yeah, that was also, that was most worrying because now my breasts they were bleeding so really obviously trying to feed a baby at that time yeah there’s a mixture of, there would be a mixture of milk and blood and at that point I felt I can’t do this.

I had a really smooth ride. That’s why having to stop was so difficult because I was really enjoying it. To be honest with you, I was only meant to stop at six months, but I carried on, so I delayed introducing complementary foods to him. I think I stopped breastfeeding somewhere near around eight months, I think.

If I decided to give him food I needed to stop, that was it. I can’t give him food and then go back to breastfeeding. It needed to just, okay once it’s reached the normal breast, something like that. It had to be one or the other and once food was introduced, I could not go back to breastfeeding.

I did not want to stop breastfeeding first and foremost, but he was pining for food, like he’d see food on a plate, and he’d pine for it. So I have a sense of guilt, you know, that I was because I mean it was time, he was six months and he was a big boy so he really, was really interested in trying, you know, foods off a plate, you know, so I would let him try, I would let him nibble once in a while but yeah I’d let him nibble against advice of my doctor so yeah, yeah I did that.

I wanted it to sort of introduce her to food because I felt each, she became fuller then I would have longer nights [laughs] of sleep. Yeah because the nights have been like a bit, a bit of a nightmare having to deal with my eldest and her and it’s just us and the school runs and everything, you know. I feel it’s, it was taking a toll on me as well, so I know it sort of worked out that, but I didn’t want to stop. When it got to the time that I know from the beginning I said to myself I’ll breastfeed until four and then along the line, I sort of felt, ‘oh maybe I could do it for six months,’ you know, but then when I thought about her eating and being full and sleeping well and you know, being able to take care of both of them because as I said her big sister is also one chatty box, full of energy and to be able to cope with the two of them is not easy so yes.

So the doctor called me and said oh, you know, ‘oh we’re in really deep water because, you know, I thought you’d stopped feeding and, you shouldn’t still be doing it, you know, he’s 15 months now you know’, I think he was saying, like he really panicked me because he was like, ‘you know, the guidelines are that he should stop after six months, and you know, you’ve already done it for long enough now and, you need, basically’ saying to me you need to stop as soon as possible. So, I kind of panicked I was like, you know, what’s going on and, you know, am I putting my son in danger and what is it, what is the reason why he’s kind of telling me to stop this, I think I didn’t really question it.

I miss breastfeeding, it was difficult the first few days like for both of us like because he wanted the milk, I mean I was only feeding him day and night at that point so I wasn’t like stopping a lot of feeds so it was just day and night but it was difficult because that was his little comfort, I know he wasn’t doing it out of hunger it was just his comfort thing. So the first few days were difficult, but obviously, but just having to stop and obviously the pain of having such full boobs at the time but yeah no it was fine, I was just, yeah it was fine.