Feeding a baby while living with HIV

Yeah she was very good at explaining things, what I should and shouldn’t do. My doctor was very adamant for just exclusively to breastfeeding, always, reminding me not to mix and stuff like that. Yeah, so, the team have been so, the team have been so good that I haven’t had any, thankfully, I haven’t had bad experience of that. Probably that’s why I’ve had, I’ve had been settled about breastfeeding, because any questions I had, any concerns I had, I always got them answered, so I was, yeah.

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.

So I read the- what’s the British HIV Society- guidelines and I found them online, the newest ones and then chatted to my consultant at my clinic now who I think actually writes those guidelines. She was fantastic and she runs the pregnancy and kind of that arm of the clinic that I go to so she’s just super knowledgeable and full of, you know, absolutely cutting edge information. You know, about all manner of things, pregnancy and feeding and that sort of thing, so yeah.

A lot of the information was from my partner and since we’ve done the initial bits and pieces we’ve had consultations with the doctor, we had an appointment just last week where this, this whole thing was discussed, that was with our consultant and midwife, and the information that they had, the guidelines were, were again handed to us then but I had already seen those guidelines albeit I can’t sit here and say that I remember everything in there because I think there were quite a few pages to it but we, you know I took them away again and I have read them and will probably continue to read it until the day the baby comes so, yeah [laughs].

I was just made to believe that breastfeeding was a high risk of transmission and that it was, you know, just a no go. It was an option if I was willing to risk that kinda thing, which obviously I wouldn't so [pause] I didn't know that there was an option to do it in a safer way, especially as I was undetectable way before I gave birth.

I was only aware of this advice when the midwives started telling me that because of the water here, we advise you to bottle feed and stuff like that. That’s when I was like “oh, okay”. Yeah so, what the midwives were telling me at that time that because here the water is good and they will give you free milk and free bottles, but to be fair I fought it all the way to the end. I did not want to bottle feed. I didn’t care about they are free bottles, I didn’t care about the free milk. For me I just wanted to have that bond with my child.

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.”

When I was pregnant, they said to me that “After I’d given birth would I want to breastfeed or would I stay on formula?” because I was given that choice so I said, “I would like to breastfeed.” So then they now referred me to the, this conversation was initiated by the midwife and then they brought in a paediatrician I think from the clinic who came and spoke to me about the options for breastfeeding more and what the procedure would be after birth that she would have to take some medication and how long she would take the medication for and the blood test that she would have to undergo. Yes so she spoke to me about that and it wasn’t in one session I met up with her three times before I gave birth, to speak about the breastfeeding and what to expect and the time that I needed to sort of express and how long I wanted to breastfeed and the fact that both of us have to be healthy, no diarrhoea, no stomach, you know, doing for both of us in order for the breastfeeding to sort of take place and that at any time I sort of felt unwell or she felt unwell then we might have to stop the breastfeeding and I was also advised, I was also advised to express and then freeze, freeze it just in case I became unwell and I didn’t want to stop then I could use the frozen once I became well enough to be breastfeeding but then during that time I would have to express and pour away if that was the scenario.

Yes so I was advised to express before birth so that she can have that because that will build her immunity that build her immunity because after three days, three days of birth, the colostrum runs out and it becomes breast milk, so yes, I expressed a bit before giving birth.