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“I decided to get tested to calm my nerves. It didn’t calm me”

Personal story of a mother with HIV from Novosibirsk oblast

I’m 39 years old. I have two children, a two-year-old and a 16-year-old.

I’ve been living with HIV for more than 10 years. I decided to go get tested to calm my nerves, but it didn’t calm me.

I don’t particularly hide my HIV status, but I don’t shout about it either. When I go to medical institutions I always disclose I am HIV positive, although I’ve run into the issue that doctors treating me for various illnesses see HIV as the cause of all my health problems.

Well before my pregnancy I knew that there are three ways of transmitting HIV and one of them is from mother to child. Maybe I saw a video somewhere about how HIV-positive mothers give birth to healthy children by taking antiretroviral therapy and abstaining from breastfeeding. The peer counselor and the doctor I saw during my pregnancy also told me about it. But the gynecologist at the women’s health clinic insisted I have an abortion because I have HIV. Probably five times over the course of my pregnancy she strongly recommended I terminate. But on the other hand, the doctor at the AIDS Center was very good, supported me and told me I was great.

After giving birth I was in the ward with other HIV-positive new moms and the question of why we weren’t breastfeeding never came up. I didn’t feel any discomfort due to the fact that I wasn’t breastfeeding.

After I was discharged from the maternity hospital, a pediatrician came to our home for an exam and told me that I could get baby formula for free. To do so I had to bring documents to the polyclinic, go through doctors, get a note from the AIDS Center that costs 75 rubles. It was all tedious and time-consuming, but it was only the first time — after that we went once a month to the pediatrician, she would examine the baby and we got the ticket for the formula at reception. There were further difficulties because I had to bring a document from the housing management showing that my baby had permanent registration (propiska), and we were having trouble with that. Because of this our access to get the formula was delayed by three months, until we were able to get her registered and receive all the documents.

I am a single mother; I don’t have a husband. The only money we were living on was from the child benefits. Formula was very expensive for me. What they gave at the dairy kitchen wasn’t enough; my daughter ate very well and would wake up 3-4 times a night to feed. The formula would run out in a week, or a week and a half at most. There was no choice, I had to buy the same formula, but the price was very high. So I had to borrow, look for money somewhere, buy it off other moms at a discount. Somehow we made it through.

I would like it all to be easier and simpler. For there to be a sufficient amount of formula, for the dairy kitchen to be as close to home as possible. In our city there are few such kitchens, one for the whole district and you have to travel far. When they start to give your baby everyday tvorog (curds) and other additional food, it’s simply not worth it to go, because you have to travel every day and spend money and time on the trip.

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