Diablos

Age at interview: 39
Age at diagnosis: 35
Brief Outline:

Diablos was diagnosed in 2017. Her partner (and father of her baby) knows about her HIV status, but her sister does not know about it. Diablos formula fed her baby to avoid all risk of HIV transmission.

Background:

Diablos is Black African and has a partner and two children, one aged 21 years and an 11-month-old baby.

More about me...

Diablos was diagnosed with HIV in 2017 during a previous pregnancy which had ended in miscarriage.

Diablos formula fed her new baby to remove all risk of HIV transmission. The hospital initially gave her the bottles and formula which helped her. Afterwards she tried to get formula milk via her GP, but they told her that parents had to buy their own. She managed for two months by getting formula milk from a friend. Then she phoned an HIV organisation who helped her after that.

Diablos says that her HIV status is the only reason behind her decision to formula feed her baby. She remembers that in the country of her birth, mothers with HIV were advised not to breastfeed.

Diablos says that the Covid-19 pandemic affected her pregnancy and also prevented her having a water birth. The pandemic lockdowns meant that pre-delivery hospital visits had been stopped, so she did not learn about where she needed to go when she went into labour. This resulted in confusion and distress trying to find the right place when Diablos started labour. However, despite this struggle, the birth had gone well.

 

Diablos was incorrectly told to get a GP prescription for formula milk.

Diablos was incorrectly told to get a GP prescription for formula milk.

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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.

 

Diablos was incorrectly told that she could access formula milk through her GP, who knew nothing about this.

Diablos was incorrectly told that she could access formula milk through her GP, who knew nothing about this.

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There was no proof, I wasn’t given any proof. And then what happened? I think I phoned a GP, or I went there, and then I told them what I was told in the hospital. And then they said they don’t know anything about that. The second time around I phoned again, and then GP who I was referred to she was like “Oh every mother they buy their own”.

And then there was this lady, well after giving birth, it’s called, okay, I don’t know how, she works in contract, she was [Name], I guess, because I was given a number, she got, I was given a number and then she came and see me in hospital. And then while I was home, okay she saw me at a given bed. And then she gave me, bottles and stuff.

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.

 

Diablos found acceptance over her diagnosis after being recommended a support worker by her doctor.

Diablos found acceptance over her diagnosis after being recommended a support worker by her doctor.

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Because I been with this group, it’s now like that’s where I got to learn about HIV. People who living with HIV, we can have kids, you know we can live a normal life. That’s where I got, I have my safety when I’m around those building. We have so much to learn about ourselves.

Mm, I think it was that 2017 if I’m not mistaken. I think it was that time, because when I went to the first day, I went to [Name] Wing, because you know when, yeah. One of the doctors they is one recommended me to, in fair she didn’t recommend she called [support worker], to there I had this patient here and then gave me directions and I went there. That’s where I made my freedom out of this horrible, horrible disease.

And how was it freedom?

You know, acceptance, I had to accept myself and you know what, this is me, there’s nothing I can change about myself. This is the people who are like me so, the people don’t care.