Marcy

Age at interview: 24

Age at diagnosis: 17

Brief Outline:

Marcy was diagnosed with HIV in 2014 during a routine health check. All her three children have been bottle fed. Marcy had wanted to breastfeed to bond, but was scared by the risk of HIV transmission.

Background:

Marcy is Black African and works as a support worker. She is single and has three children, aged 5 and 4 years old and one month old baby.

More about me...

Marcy was trafficked to the UK from West Africa. She was diagnosed with HIV in 2014 after a routine health check for asylum seekers. She struggled with her diagnosis because she did not know much about HIV. Her HIV doctor told her she would be okay and encouraged her not to search the internet for information but call her instead if she had any questions. Marcy faced many challenges in her life at the same time as her diagnosis and did not talk to anyone (aside from her doctor) about her diagnosis.

The national guidelines were different when Marcy was diagnosed so she did not begin HIV medication immediately. She started taking them in 2016 when she was pregnant. During her first pregnancy, Marcy struggled to remember all the information because of her poor mental health at the time. What did “stick” in her mind was the importance of taking HIV medication to prevent transmission to her baby. She was determined to make sure her babies did not have HIV.

Marcy has formula fed all her children. When she had her oldest child, the advice was to formula feed. By the time she had her youngest child, she had not been told that breastfeeding was possible and had therefore assumed that the infant feeding advice was the same as it had been in 2016. While her eldest child was fine with formula milk, her second child did not like it. Marcy also felt less of a bond with her second child, which she felt could have been overcome by breastfeeding. Marcy has bonded fine with her youngest child.

Marcy did not know the guidelines had changed and wishes the doctor had explained it to her. She would have wanted to breastfeed to strengthen the bond with her child, but at the same time would have worried about HIV transmission. Marcy was confused about what “exclusive breastfeeding” (as recommended in the 2020 BHIVA guidelines) meant and wondered whether a baby accidentally drinking water in the bath would pose a risk.

Marcy’s birth plan stated that she should be given medication to stop lactation, but a midwife on the maternity ward questioned why she needed it and said her milk would stop naturally after a few days. Marcy agreed as she was already “fed up” at the amount of medication she was already taking.

Marcy received free formula milk for all her children. For her first child, she received it from a donor milk charity that provided donor milk and formula milk to mothers living with HIV. For her youngest child, she received the milk from her hospital.

Marcy has been asked by people why she was not breastfeeding. She attempted to hide that she was not breastfeeding as she feels it is “expected in the African community”. She told some people that she stopped breastfeeding early. Her doctor suggested she tell people that taking antibiotics prevented her from breastfeeding. Marcy “feels bad” about all this, and sometimes feels “Like a liar”.

Marcy was not told about the BHIVA guidelines and that she had an option to breastfeed – she feels she would have tried it if she had known.

If I had known that for this my baby, this one that’s one month now, maybe when my doctor asked me, “What are my options?” if he had explained that recently they’ve updated [the guidelines] and he had given me this information I would have gone straight to breast-, breastfeeding and maybe I would ask him, I would have asked him that same question of that has been on my mind since that made me go for bottle feeding. So, because I didn’t get this information I was just going, “Oh bottle feed.”

Marcy had three children. She breastfed her eldest child and formula fed the other two. She wondered if her feeding choices had any effect on how she had bonded with each of them.

Oh, everything is fine, he’s been well. The bonding is there he’s, he’s eating well. It’s okay but I think the first, for my first son and this, this with the new baby the connection and the bonding is so strong for the second one I don’t know what happened but for this one is okay.

Marcy's doctor helped her think of things to say to others when they asked why she was not breastfeeding.

Sometimes you just say, “Oh well big baby’s already six months?” I say, “No we stop like four months ago, we stop when he was four.” I just look for one excuse or the other because if you, if they notice you’re not breastfeeding they will kind of ask, “Why? Are you sick?” The doctor tell you, those questions are really usual for you to answer so I just look for one excuse. Yeah I just remember now, because I remember I told my doctor when she was when I was worried, she was said, she was saying, “Okay you have any reason why you want to breastfeed and apart from the bond and?” and I said, “People will ask questions, people will say why am I not, what am I going to tell them?” and she just said, “Just tell her you have I can’t remember the name of thing she said that you are on antibiotics so you can’t breastfeed baby for now.” They already know when you’re taking antibiotics, you can’t breastfeed, so she gave me that option of lie to tell people if they ask but that’s my first, that was what I was saying for my first child.

Marcy felt she had to hide that she was not breastfeeding.

Yeah it’s really, it’s a big, it’s really a big one because you kind of, you try to hide, you try to, they will just ask, “Oh are you not breastfeeding?” because I don’t know African community they see it as the most that you don’t have option to go to bottle feeding, something that you must do for your child. So, when they see you not breastfeeding they look at, they just look at you somehow and they’ll ask you, “Oh are you not breastfeeding?