“Your child has HIV”. How do mothers in Kyrgyzstan fight the verdict of doctors and society?

Earlier this year, a 42-year-old Kyrgyz woman whose child was infected with HIV in a hospital 14 years ago won a lawsuit against the authorities, proving that the doctors were at fault – the infection most likely occurred during blood transfusions or injections. Mayram* is currently the only one to whom the state has had to pay such a large sum by local standards – 2 million soms (over $20,000) for the damage caused. The majority of the parents of the 390 children infected in the hospital, who account for half of all pediatric HIV cases in Kyrgyzstan, have received much smaller awards or are still awaiting a court decision. Their children were infected in 2006 and 2007 in hospitals in Nookat, Kara-Suu, and Osh in southern Kyrgyzstan. 45 of them died, never having had the chance to grow up. Many of the children and their parents learned of their HIV status years later and faced stigma and discrimination in society. Relatives turned their backs on them, and they are still trying to understand how their personal tragedy happened. The Mayram precedent has given hope to many mothers seeking truth and justice in the courts. Here are the stories of a few of them.

Mira, 50, divides her life into before and after, when she found out 10 years ago that her child was infected with HIV. Her son Ermeck was only four years old at the time, and he was infected in the hospital as a baby. “My son was only 17 days old when we ended up in a rural hospital with a fever and diarrhea. His condition worsened and he fell into a coma. We were taken to the intensive care unit of the regional hospital in Osh, where we were treated. At that time, I was grateful to the doctors, but I did not know that my son would be sick for the rest of his life,” says Mira.

Along with her son, there were five infants in the neonatal intensive care unit, which was later abolished, and all of them were infected with HIV. We explain quickly, simply, and clearly what happened, why it matters, and what happens next. The number of episodes End of story podcast advertisement Later, in court, it was revealed that the infection was most likely due to medical or nursing negligence. At that time, Mira learned that there had been 80 such infections in the Osh region alone in 2007 and 2008. Hospitals were identified as the source of infection years later when parents of children underwent testing. Between 2005 and 2018, 50 trials were initiated. Fourteen medical professionals were involved in these cases, of whom four were acquitted by the regional court, three were sentenced to actual prison terms, and the rest received suspended sentences or fines. Those convicted later appealed to the Supreme Court of Kyrgyzstan. Mira never received justice, and the doctors and nurses whose mistake led to her son’s infection remain free and continue to practice. “Our case in court was dismissed because they couldn’t determine exactly who was to blame, but I remember that when my son was in a coma, they would give him intravenous drips and literally inject 50 milligrams, and then they would take the needle out, pour out some of the medicine, and give it to the next child,” Mira vaguely recalls. Doctors who worked at the regional children’s hospital during the years Mira’s son was sick (and who requested anonymity) recall that during those years, all hospitals in the region were just beginning to transition from using reusable syringes and equipment to disposable ones. Often, syringes and catheters were purchased by the patients themselves because the hospitals were poorly supplied. Mira still remembers with tears the moment she was told of her son’s illness. He was in the hospital being treated for a gastrointestinal infection. The child spent most of his childhood in the hospital, receiving treatment every three months, Mira recalls. “My child was sick like in horror movies about childhood diseases, he had such thin legs and hands and a huge head. He seemed to be dying before my eyes and I begged the doctors to find out what was wrong with him. They did all the tests they could, and soon a young doctor in the hallway announced, as if it were a death sentence, “Your child has HIV,” Mira recalls without tears.

Now she no longer sees HIV as a death sentence, but at the time, Mira only knew what she heard on television: “HIV is the plague of the 20th century.” It seemed that this distant and unknown disease would not affect her. Mira married early, lived in a remote mountain village in Kyrgyzstan, and raised seven children. Her life revolved around the house and the field, where she and her husband sowed and planted together. “Life flashed before my eyes when I heard the doctor’s words. I stood there as if someone had hit me on the head. It turned out that I had fainted and lost consciousness. When I woke up, I was in my son’s ward, surrounded by doctors who assured me that HIV was not fatal,” Mira says. But the hardest part was yet to come: Mira’s husband blamed her for their son’s illness. Her negative tests didn’t change his mind. He blamed his wife for taking their child to the hospital and not monitoring him in intensive care. He demanded that the state take care of their infected son (both parents and the rest of their children are not HIV positive – bbc russian commentary). “We argued and fought for two months, I begged him, explained as best I could, took him to doctors, asked them to explain. But I couldn’t convince him, and I had to choose between my son and him, and I chose my son. Since then, he has never seen his children, as if they were all lepers,” Mira recalls with tears in her eyes. So Mira found herself alone with seven children and had to move to the city of Osh (the second largest city in southern Kyrgyzstan) in search of work. A similar fate awaited many other mothers of children infected with HIV through hospital transmission. Most were abandoned by their families, husbands and communities. In 2011, some of them even protested near the building of the Kyrgyz Parliament, demanding that the MPs take their sick children with them. At that time, these mothers were given a cow each as compensation. When Mira went to the welfare office to apply for government benefits for her son, the entire village where Mira lived with her husband found out about her status. “When I returned to process the documents, I saw that my name was crossed out in the register and that someone else’s name was written on it. They spoke to me strangely, did not look me in the eye. They were whispering behind my back. It was as if they had erased me, I’ve never felt so humiliated,” says Mira.

“Gulia, 46, still blames herself for taking her son to the hospital when he was six months old. He was admitted to the local hospital with a high temperature, then transferred to the regional hospital. Then back to the local hospital. In total, they spent more than a month in the hospital,” Gulia recalls. According to the Republican HIV Center, 23 children were infected with HIV in the Nookatsk district hospital in 2006 and 2007. In total, there are 180 HIV-positive children in the district, some of whom only found out about the virus years later. At the time, the head doctor of the Nookatsk hospital, Asamadin Maripov, told the BBC about the lack of medical facilities. “70-80 percent of hospitals lack sewage, toilets, and hot water, not to mention a shortage of syringes and catheters. No one takes this into account when making accusations against us,” says Maripov. I was in the hospital when they asked me to buy a catheter myself – for 247 soms. She often remembers this amount and says that this is exactly how much her son’s illness cost her. She was one of the first to suspect that something was wrong and to raise the alarm.

“My son was sick all the time, it was impossible, we did all kinds of tests on him, even bone tissue, then when we found out that my husband works in Russia, they asked him to come, saying that our son could die. He flew in and they informed us about our son’s condition,” says Gulya. Gulnara and her husband’s tests came back negative, but the couple couldn’t continue living together due to arguments and fights. Gulnara had to take the children and move in with her parents, and she stopped teaching at the school. Only after two years did she manage to reconcile with her husband when he returned from Russia and accepted their son’s illness. Their reunion was facilitated by the court, which partially identified the guilty parties and awarded them moral compensation of 150,000 soms (about $1,500) when she won the case in the first instance. The decision was later appealed to the Supreme Court. Experts note that compensation to mothers of sick children was chaotic, as they found out about the infection not immediately, but within the next five years. The very first parents who filed a lawsuit were able to win in court and received $1000-2000 or municipal housing. The rest were left with nothing. Gulya says the hardest times are ahead of her: “He is growing up, all these years he dreamed of becoming a doctor, and recently he came and said: ‘Mom, it turns out that people like me cannot work as doctors. Soon there will be a draft, he can’t go to the army either, we have to collect documents to exempt him, but the scariest thing is love. He likes a girl who does not have HIV, I immediately stopped him and told him that they cannot be together,” Gulya says sadly.

Gulya and her family live in a close-knit community where everyone knows everything about each other. Her son’s HIV-positive status has been revealed several times to strangers, including his first-grade teacher, who didn’t want him in her class because of his illness. Gulya had to go through many court cases to get him fired and protect her son from discrimination, but even today some classmates still talk behind his back. “We young people don’t date for long. If a boy and a girl are seen together, matchmakers are sent and then they get married. Of course, his girlfriend’s parents will not marry her off to him. Who would want their daughter to marry someone with HIV? And I can’t take the blame for that either,” says Gulya. With continued treatment (which includes daily medication and regular testing), HIV-infected individuals will not pass the virus to their partners and children (during childbirth and breastfeeding), but no one can give a 100 percent guarantee. As a result, teenagers often hide their status from their peers, boyfriends and girlfriends, and when they start dating, they stop taking their medication altogether. “A friend of my son’s from the support group, who is older, says he won’t take his medication so his girlfriend won’t find out he’s sick. And if he can’t marry her, he will end his life. Now I’m trying to convince my son to find a girl who is also HIV-positive and marry her,” says Gulia. Another concern for Gulya is how her son will continue his treatment. HIV treatment is provided free by the government, but it has many side effects and the child often gets sick. Currently, he receives a monthly allowance of 4,000 soms (less than $50) from the government. But when he turns 18, he will no longer receive it, and Gulya believes that the authorities should help her son and other children with HIV throughout their lives. According to the National Statistical Committee, the subsistence level is 5843 soms (about $69 per month). About 20 percent of Kyrgyzstan’s population lived below the poverty line in 2019, but according to World Bank projections, this number could rise to 35 percent by 2021 due to the consequences of the pandemic and quarantine. At the same time, about one million Kyrgyz live and work in Russia because they cannot find work at home. In Russia, migrants can be deported by law if their HIV-positive status is disclosed. Baktygul Israilova is the founder of the National Network of Women Living with HIV Fund and the head of the Public Council of the Ministry of Health. She is currently working on research into the needs and requirements of children living with HIV.

Baktygul was the first person in Kyrgyzstan to publicly disclose her HIV-positive status in 2018, and is an outspoken advocate for the rights of women living with HIV. In 2011, she contracted HIV through sexual intercourse with her husband. She only found out during her pregnancy, when she took an HIV test, which is mandatory for all pregnant women registered with a gynecologist in Kyrgyzstan. At that time, the predominant method of transmission in Kyrgyzstan was by injection, and few people were infected by their partners. Now, however, more people are being infected this way. Baktygul believes that migration is also contributing to the increase in the number of HIV-infected people. “I was a midwife at the time, and I even did reproductive health training and often talked about how to protect yourself from HIV. I was 38 years old and expecting a long-awaited child from my husband, so when I was told that I was sick, I was just shocked, I even wanted to harm myself, but I was stopped by the fact that I had a 10-year-old daughter,” Baktygul says. Baktygul faced stigma and discrimination at the maternity hospital where she worked. Her colleagues treated her and her child badly. She recalls with horror how they quartzed (treated the room with ultraviolet rays that kill bacteria and germs) the room where the baby was lying and no nurse would pick him up, they just covered him with a blanket. “After my cesarean, with my breasts bandaged, I immediately asked to be discharged at my own risk after two days, because they didn’t even give the baby his medicine. Maybe the doctors were not trained, but it is difficult to remember. The fact that my parents refused to communicate with me only worsened my condition. I felt like a leper, dangerous, a threat to those around me,” Baktygul says. Baktygul went through many difficulties and obstacles to have a healthy daughter. During her pregnancy, she was offered an abortion, but she refused.

Illustrations by Magerram Zeynalov