First reported by Taiga.info, the story of a family couple from the Novosibirsk Region who faced bullying after they adopted an HIV-infected child spread across almost all Russian state media a week ago. This special report by AIDS.CENTER looks into how the family, against whom the whole city is up in arms, lives.
Hundreds of children gather at weekends in the huge playground of the MEGA Shopping Centre in Novosibirsk. They run through mazes and jump on trampolines. In the crowd of children is a puny boy with an almost completely bald head. He is already seven, but because of his short stature, he doesn’t look more than five. In appearance, he almost resembles the other kids. So no one would ever think that last autumn, the boy almost died of AIDS. And this spring, he came under the spotlight from the story, which reminded the 140-million country of the existence of the town of Iskitim. The town is located in the Novosibirsk Region, 26 kilometers south of the region's centre.
Nor would anyone think that HIV is still surrounded by stigma in this country at the beginning of the 21st century. Enough stigma for adults and strong people to bully a seven-year-old child and to ask his family to get out of their hometown.
Everyone Knows Everyone
Iskitim is a typical provincial district centre. In Siberia, the town is known for its cement plant. Due to ever-present dust that is an effect of the harmful production, people joke about the place by saying: "There is soot below, and there is smoke above — this is the town of Iskitim." The only photo of the town on Wikipedia shows some unattractive suburbs full of wooden private houses, rows of metal garages, and just above – chimneys from the plant.
Today, only about 57 thousand people live here, and six degrees of separation can be reduced to three. Almost all residents know each other. Someone's parents have worked together, someone's parents went to the same school, and someone else's children got married. There are only three outpatient clinics and one municipal hospital in the town. There are few big families with foster children, so social workers, doctors and teachers know them all by face.
Until quite recently, the Iskitim authorities would regularly nominate this family for various awards, holding them up as a role model for other residents, and local television would film them for stories about "exemplary adoptive parents".
Now, in Novosibirsk, we sit down with this "exemplary adoptive mother" at a bistro table by the shopping centre so as to see the playground. The woman keeps shuddering throughout the conversation. Her clear blue eyes glitter with tears, but she will not allow herself to cry. She tells her story confidently and casually, as if talking about her son recently getting a C in maths.
Close relatives were harsh in making it clear that they would never step across their home's doorstep again if the child returned.
In February 2018, she and her husband liked a boy in an orphanage in Toguchin (also in the Novosibirsk Region). The boy’s birth mother had died of tuberculosis a little while back, and since there was no one else to take care of him, the child ended up at the institution. At the orphanage, he was called "the little old man" for his shuffling walk and dislike of active games. But the couple liked the child all the same. For one – for his sense of humour. “He may do a joke so that it is not offensive, but everyone is falling from laughter,” the woman now recalls. So they decided to adopt him, and already had all the paperwork done by April.
“Bedtime stories, kisses — all this was a shock to him. When we got home, he was so happy that he started calling me Mum right away.”
Giving the child over to the new parents, the orphanage's health workers said that they only had to register him with a TB specialist because of his biological mother's tuberculosis. But when they took a Mantoux test in Iskitim, he showed a normal reaction, and so the doctor told the parents not to worry.
“The TB specialist said: 'Why do you need to register?'. But they told me to do it, which meant it was necessary,” says the mother with unconcealed indignation. They somehow managed to get a referral to the regional hospital, but on the appointed day, the boy got badly sunburnt. That's when the family's troubles began, turning into an almost all-Russian scandal.
"Not Over The Phone"
The boy's sunburnt skin got covered with purulent blisters. Because of the sores all over his body, the test had to be postponed for a while until they healed up. “Finally, the MSCT was done. But when I took the result, it showed a collapse of the right lung. It looked like tuberculosis,” the woman explains.
To get a referral to the Children's Regional Tuberculosis Hospital, a blood test for HIV was required, which, for some odd reasons, no one had suggested doing before.
“After my son was taken to the hospital, I went to see a friend. And I felt her being somewhat uncomfortable talking to me. So I asked her what the matter was. And she said, “They were talking about your new one in the hospital. They said he is HIV-positive and because of that, you decided to take him to the regional hospital to die". It was such a shock. Initially, I hadn't planned on adopting a child with HIV. When we were looking for our first child, these children were presented to us. There were especially many of them in Kemerovo. But I did not even consider them, because I was not ready to deal with this diagnosis face to face.” The woman admits that she didn’t know anything about the virus itself or its transmission methods at that time, and, most importantly, she didn’t know that it was impossible to get infected through household contact and that people could live for many years after testing positive.
The next day, she went to the hospital early in the morning to see the boy. The doctors assured her that they had not detected any infection. However, after a couple of days, they called and asked her to come urgently, saying that it was not something to talk about over the phone.
Tears Not In Vain
According to the woman, she spent the first day sobbing. She was scared that someone from the family had got infected already too. And besides, she was scared that people would eventually find out, and then, no one would certainly even want to say hello to them any more.
“I grew up in the 90s, when every magazine and every TV channel would report on AIDS as the plague of the 20th century,” she recalls. "It was believed that only drug users or people involved in prostitution could get AIDS. And that they all died quickly. That's why at first, we decided not to take him home from the hospital. After all, if we took him home, the other children would have had to be transferred to another school. And how many schools are there in Iskitim?”
Besides, close relatives strongly made it clear that they would never step across their home's doorstep if the child returned, and her mother-in-law even threatened to take away her granddaughter.
Meanwhile, the husband visited the boy, only to find out that he was now in a critical condition. It is not clear how he got infected. He was the youngest child in his family, and the medical record of his birth mother did not contain any HIV diagnoses.
In the end, the dilemma was resolved by the call of a distant friend who worked at the local AIDS centre. She said: “Come on, what are you afraid of? Are you afraid of getting infected or you don't want to take him home, because you are squeamish about this whole HIV thing? You will never get infected. I have been working with patients in severe conditions for 20 years. My family and my children come here at times. And we're all fine.”
Her friend's words calmed the woman down. And an elementary Internet search ultimately convinced her that the boy was not dangerous. “I realised that I couldn't leave the child to die alone in the hospital ward,” the woman explains. However, the rumours had already started to swirl through Iskitim.
Suddenly, family friends and acquaintances began to avoid the couple on any pretext. A little later, the town officials joined them.
“When I came to the social services office to enrol my children for a massage and physical therapy and make an appointment with a speech therapist, one of the officials said: 'Don't you understand? Everybody knows already. Do you want us to wash everything with bleach after he leaves?'” the woman recalls.
Almost everyone had turned against the family. The news about her son spread around the town so quickly that even those people she had not seen for some five years already began writing her inquiring about the situation. Interestingly, almost every one of them happened to have relatives or friends at the clinic, at the social services office or at the child protection services department.
The woman is convinced that someone from the local hospital, most likely someone working in the laboratory, should have revealed the boy's diagnosis. But she does not know who exactly it could be. The prosecutor's office started to look into the breach of medical confidentiality. However, the family's acquaintances still do not want to tell how they came to know about the diagnosis, and insist that it was her who shared that information with them, although she remembers very well that she never met with them during that time.
The woman now mainly fears that her son will fail to get a clean bill of health to start school and will need to be home schooled. “They are already advising us to go to a special school, but does he have any intellectual disabilities? Or does it mean that children with intellectual disabilities can talk to him, while the others can't?”. The woman is outraged.
“I don't know how we are supposed to live going forward. The other day, a guy called from an unknown number and said that I had done a good thing by not giving up the child, but that we still should go to a private school," she recalls. And she says: "We have long wanted to move to Novosibirsk, and now we want it even more."
The family decided that there is no longer any place for them in Iskitim. Even if they are allowed to send the boy to a regular school, teachers, parents and other schoolchildren would still bully him. Even now, when the friends of her older children come to visit, they ask not to tell anyone that they were at their house: their parents forbade them to be friends with the whole family once they learnt about the diagnosis.
The Invisible Family
The pills raised the boy almost from the dead. During the first weeks, when he was at the regional tuberculosis hospital, things were going bad: they stuffed him with medicines in heavy doses, but his condition only got worse, to the extend that the six-year-old child himself said: "I'm dead". But everything worked out, and after the child was prescribed the ART, his health began to improve. And by New Year, he was able to leave the hospital.
After the months-long imprisonment in the hospital ward, he is now returning to his normal life. Meanwhile, his parents are selling their house. "We tried to sell it for 4.3 million, then for 4.1, but no one wants to buy it." Housing prices in Novosibirsk are incomparably different from those in Iskitim. And apart from space (after all, it is a large family), they need a good school, one of the children needs a special one, and preferably not far from home.
The Children's Ombudsman of the Novosibirsk Region promised to take the situation under her personal control.
The woman now believes that people just need time and more information about the treatment. After several months, even her mother-in-law's resentment gave way to acceptance – she now babysits her grandchildren when their parents need to go to Novosibirsk.
But the main comfort for her now is that the other family members, and especially children, have now accepted the boy. Older children have already been told about the diagnosis. For a start, the younger ones were told that if he got hurt, they should not touch the wound but need to call their parents. They don’t care about their brother’s disease, and always play together, even asking their parents to give him the best treats because "he spent so much time at the hospital".
After the case got nationwide attention, the Children's Ombudsman of the Novosibirsk Region Nadezhda Boltenko promised to take the situation around the HIV-positive orphan under her personal control. According to the Ministry of Labour and Social Development of the Novosibirsk Region, an investigation will be carried out into the diagnosis disclosure and hate campaign.
The outcome of all these investigations is yet to be seen. Until then, the child's mother will keep hoping. Hoping that after they finally sell their house and leave their hometown, she and her children will be able to get lost among the one and a half million inhabitants of Novosibirsk.
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