Feeding a baby while living with HIV

Amy:
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.  
 
Amina:
I feel like [um] yeah, my pregnancy is a positive thing and not like oh I’m burdened with a pregnancy now.  [um] look now I’m happy again.
 
Emily:
I discussed it with my partner and then my family back home, I came to conclusion that [um] for the safety of the baby I will not breastfeed, I will not breastfeed, I will bottle feed and then they said that they have [um] [er] a, a charity that they give, give baby food to people in my condition so I was also very glad to hear about that so that helped. 
 
Sasha:
Even though I’ve been to the medical conferences we don’t have enough research on this. And what about if I just did the first week, what about if I just did this, what about if I did that, the other thing that happened afterwards and as I say the clinic didn’t actually guide it all it was me that guided it, I questioned it, I asked the questions. 
 
Gracelove: 
Yes so she spoke to me about that and it wasn’t in one session [um] I met up with her three times before I gave birth, to speak about the breastfeeding and what to expect and [um] the time that I needed to sort of express and how long I wanted to breastfeed and [em] the fact that both of us have to be healthy.
 
Edward:
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 [um] just last week where this, this whole thing was discussed [um] that was with our consultant and midwife and [um] the information that they had.
 
Camille:
There was a lady that gave me the number as well, they also deal with people with HIV and give support in terms of [um] 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 did want to do it.  

I’m a Consultant HIV physician at Mortimer Market Centre in London. I am also an academic at University College London specialising in HIV in women, and I was part of the study team for this project.
 
The British HIV Association - BHIVA - sets the treatment guidelines for all people living with HIV in the UK. Through medication the risk of transmitting HIV through pregnancy and childbirth are greatly reduced. This is why all individuals are an offered an HIV test during pregnancy. Parents living with HIV are advised to take medication whilst pregnant if they aren’t already.
 
Whilst the risk of HIV transmission through breastfeeding is greatly reduced with medication it is not zero. The current BHIVA pregnancy guidelines recommend that individuals with HIV should exclusively formula feed to remove all risk of HIV transmission. However, individuals with HIV who wish to breastfeed can be supported to do this if they have an undetectable viral load and agree to monthly blood tests for both themselves and their baby. 
 
Mixing breastfeeding and solids especially before six months isn’t advised as it can increase the chances of HIV transmission. This is why we advise weaning from breastfeeding by 6 months. Mixed breastfeeding and formula feeding is also not recommended apart from in certain situations where formula is needed to make sure the baby is getting enough nutrition.
 
If you are considering breastfeeding it is really important to talk to your medical team about your options. If you are currently breastfeeding and living with HIV and you have any questions or concerns then your medical team should be able to advise.

Hello, I’m Bakita Kasadha. I’m a researcher at the University of Oxford and I’m part of the Nourish-UK study. As a study team, we explored the topic of HIV and infant feeding, and we have shared our findings here. This section of the hexi.ox.ac.uk website is for anyone living with HIV, in the UK, deciding how to feed their babies, and for the health professionals and family and friends who may be supporting them.  
 
Please note that while some of the information here may be applicable to transgender and gender diverse people too, we only managed to speak with cisgender women for this project. We know there will be additional nuanced experiences a transgender or non-binary person will have when making infant feeding decisions, while navigating perinatal care and wider healthcare more generally.
 
Between April 2021 and January 2022, we spoke to 38 parents, 36 of whom were pregnant women and mothers living with HIV, plus two male partners of a couple of women. All the women we spoke with were either pregnant or had recently had a baby. At the time we held the interviews, the 2020 UK British HIV Association (BHIVA) guidelines on pregnancy and infant feeding were in operation.
 
In this site, you’ll hear women talking about feeding their babies, and the wider experience of being a parent living with HIV. They share their experiences, memories and feelings of when they were diagnosed with HIV; their views about UK guidelines on infant feeding; their experiences with different kinds of medical staff; their relationships with their family and friends; and their actual experiences of breastfeeding or formula feeding their babies. We also spoke to two men who are not living with HIV themselves but are in relationships with women living with HIV. Both men were involved in the decision about how to feed their babies.
 
In addition to people talking about their experiences, there is also a section called 'Useful resources' where you can find medical information and practical information about the current UK guidelines and other medical information, as well as a list of organisations and charities that support families or mothers living with HIV, including free access to formula milk and other resources.
 
On behalf of the study team, I would like to thank everybody who supported this project, especially everyone who agreed to be interviewed and generously shared their experiences in order to help others. We would also like to thank our funder NIHR Research for Patient Benefit, for supporting this study.