“My son told his classmates about his diagnosis and they started bullying him”. How do children with HIV live in Russia?

Parents have to keep the diagnosis in secret to protect their child
Natalia Nekhlebova | 04 December 2020
“My son told his classmates about his diagnosis and they started bullying him”. How do children with HIV live in Russia?

According to the Russian Ministry of Health, there are about 10 thousand children with HIV infection in Russia. They grow up healthy and happy with the right treatment: they play sports, succeed at school, grow up, and start families. But a diagnosis of “HIV+” in our country can still lead to bullying. Both children and teenagers are especially vulnerable to it. On AIDS day, Pravmir learnt how parents cope with it and what each of us can do to help them.

I have four HIV-positive kids, – says Irina from Moscow. – We adopted them seven years ago. Three girls and a boy. They were from 5 to 9 years old then. Yes, they need to take pills every day in the mornings and evenings. But this is where all their differences from healthy children end. They do professional sports, succeed at school. They are loved and full of life like all children.

They will not die before you

4,307 children were born to HIV-infected mothers in Russia in 2020, of which 27 children (0,6%) were confirmed to have HIV infection.

If a woman with HIV undergoes antiretroviral therapy during pregnancy and childbirth and her viral load before delivery is below the detection threshold, then mother does not transmit the HIV infection to the child, – says Mila Gutova, PhD in Medicine, infectious diseases specialist at the AIDS center in St. Petersburg. – That is why HIV-infected mothers give birth to healthy children now. A child is born with HIV infection if their mother did not undergo therapy. HIV-infected children live as long as children without HIV-positive status with the right treatment, monitoring by specialists, and compliance with all recommendations.

If adolescents comprised 30% of children with HIV 3-4 years ago and 40% two years ago, today they comprise half of their number. Vertical transmission of HIV (from mother to child) in Russia has almost been suppressed.

There are about 300 people with HIV living in St. Petersburg now. They are children and teenagers under 18, – says Mariya Godlevskaya, project manager of EVA Association, which helps women with HIV. – All these children and teenagers need to live a full life is to take medications on time (they are given out for free). Parents and guardians should monitor the treatment. Sometimes they do not fully understand the importance of this control.

It happens that grandmothers are the only guardians, – continues Mariya Godlevskaya. – Parents may be deprived of their parental rights due to their antisocial lifestyle or they may be in prison. And a grandmother may not understand what kind of diagnosis this is, where they should go to get free medications. A child needs to have their blood tested every three or six months to determine how effective the treatment is. A grandmother can forget about it.

Child services, as a rule, act in two opposite scenarios in this situation. If the AIDS center where the child is registered raises red flags that a child is not undergoing the treatment, child services can remove the child from the family.

Child services very rarely try to convey to the child’s guardians that treatment is necessary, – explains Mariya, – their methods are mostly punitive. They just take away the child. Well, people who work in child services may not understand what HIV is. Then they simply ignore the flags raised by the AIDS center.

The disease is more aggressive without treatment for children than for adults. There are fewer registered medications for children than for adults. Kids take medicine in the form of syrup, older children take it in pills.

Some western medications are no longer delivered to Russia, – says Alyona Sinkevich, coordinator of the “Close people” project of the “Volunteers in support of orphaned children” foundation, – children receive Russian medications, or some generics that are allowed in our country. They can be worse in quality. This means that these medications will cope well with the virus, but still give side effects. Side effects may be unpleasant, children may feel nauseous. It is very difficult to try to persuade a child who feels nauseous to take medications. Some medications are very unpleasant to the taste. Children even refuse to eat after taking them. Because the unpleasant taste remains for the whole day. But this is solvable. You need to talk with your doctor about changing the medication.

You have to keep quiet because people might start hating you”

Katya found out that she has HIV at the women’s consultation clinic.

I was three months pregnant, – she says. – I do not know how I got infected. I do not take drugs, I am married. I underwent therapy during the pregnancy, and my daughter was born healthy. We live in a small city. The nurse told other women at the consultation center about my diagnosis. As soon as I went out on the street with my baby, everyone gave us a wide berth. Not a single person stayed at the children’s playground. The neighbors did not talk to us. I had to show a certificate that my daughter was healthy. Everyone was so afraid of us as if they would immediately get infected just by touching us.

HIV is transmitted in three ways, – says Mila Gutova. – Sexually, by contact through the blood (the blood should get to the bloodstream and not on the wound, hangnail, or skin) and from mother to child.

Stigmatization and bullying are the most difficult things that HIV-infected people have to deal with right now. Children and adolescents are the least protected from this.

It is well known that HIV cannot be transmitted in domestic conditions, – says Alyona Sinkevich. – People with HIV are expected to have a normal lifespan now, many countries are ready to accept migrants with HIV because the diagnosis is no longer so frightening. HIV is no longer considered a plague of the 20th century. Yet, something extremely unpleasant still makes life difficult for families with HIV children: public opinion. If you tell a child in the kindergarten or school that they have HIV, others will bully them. An average person does not want to think, to analyze information, they prefer to simply be afraid and exclude scary factors from their surroundings. This causes parents of HIV children to hide a lot of things. It is much more harder for children to cope with bullying than for adults.

Doctors write “HIV+” in large letters on the first page of the child’s medical card that parents need to bring to the kindergarten or school. To avoid bullying of their child, parents conceal this inscription.

Some public organizations call on parents of HIV children to fight the stigma by providing a personal example. They advise to tell school and kindergarten children about the diagnosis and at the same time explain that it is not dangerous. To spread information about HIV as much as possible in the hope that others will stop being afraid.

However, it often leads to zero or negative result, – admits Alyona Sinkevich. – If the parent says, “I will change the attitude to this problem in society”, their child and family begin to suffer. I know of cases when people had to move to another city because people persecuted them. In my opinion, this is the most acute problem right now. People need to stop being afraid of HIV-infected people. Because such situations now develop according to a well-known xenophobia scenario. It does not matter who we hate, you just need to use the right words.

Valentina took custody of a boy with HIV six years ago. He is 12 now.

It is very difficult to deal with teenagers, – sighs Valentina, – he is a rebel. He refuses to take medications. He throws them away. My son told about his diagnosis at school. That resulted in a revolt of its own. We had to change schools. Children started strongly bullying him. Even some teachers allowed themselves to speak out on this topic. This is very unfair. The child is not to blame for his diagnosis. A teenager cannot understand why they should hide it. And it would seem that they should not. Yet, experience has shown that it is better to keep quiet. And simply because others might start hating you.

I adopted 4 children with HIV”

Foster families adopt children with HIV from orphanages more often now.

Despite the fact that the stigma remains, we see huge changes in the arrangement system of families with HIV children, – says Alyona Sinkevich. – I have been working in this field since 1992, and I remember clearly how children with HIV were kept in separate boxes in the late 90s, how people were afraid to touch them with their hands. Now everything has changed. Children with HIV are in the same groups as everyone else. I still hear from some regions that orphanage employees are afraid of them, they touch children with gloves, but this is considered a rule violation. For the rules say that there is no difference between these children and the rest. This had an impact on how foster parents started taking children home. It is especially noticeable in Moscow. There is a specialized children’s orphanage “Young falcon” which has children with HIV. All children there found families.

The vast majority of foster families look for a healthy child under 5 years of age. However, there are very few of them in orphanages.

There are parents who do great with children with developmental disorders, but it was very important to me that children had preserved intelligence, – says Irina, a foster mother of 4 HIV children. – I learned a long time ago about a family with the HIV-positive child who had to leave their city because of bullying. They lived in the AIDS center in Moscow because they had nowhere to live. Mom, dad, and a baby were kicked out of the house because of the diagnosis. I was shocked by that. I gave them some clothes. Since then, I have been thinking about adopting children with HIV.

According to Irina, there is only one rule of caution for children in her family: if someone is bleeding, they need to not touch anything or pick the wound with their fingers and wait until mom and dad solve the problem. All dishware is shared in the house. They drink from the same bottle when they are outside.

Children are used to taking pills, – explains Irina. – They ask little questions. I tell them what they need to do so that their stomach works well, and they simply take the medications. They get their blood tested every three months to see how the therapy is working. Children are used to it, too. If it has to be done, it has to be done.

The most difficult thing is telling the child about the diagnosis. It is recommended to do this with a psychologist after they turn 10 years old.

I told my older daughter when she was 13, – says the foster mother. – We did it together with a psychologist. We explained that this will mainly affect her choice of a partner. That she will need to choose someone who she is going to tell about her diagnosis very carefully. All people should pay more attention to those with whom they start a close relationship. We told our daughter that she just has one more factor that will help her be more selective in this regard. Only a really close person can be let into her secret. Thus, her personal life may be even happier than that of those who do not need to be so careful and cautious. Of course, my daughter was in a depressed state for several days. But she overcame this, and she is comfortable with her diagnosis now.

Sometimes friends or acquaintances ask Irina’s children to explain what kind of pills they take. In such cases, children respond that it is personal or tell them to ask their foster mother.

You need to be careful with medications, – admits Irina. – Our friends who also adopted HIV children had a nanny who found medication packages, googled the diagnosis, and never returned. Therefore, when children go to summer camp, we put medications in special containers.

According to Irina, these things do not matter.

We are just an ordinary happy family, – she says. – There are nuances, but they are insignificant. I would advise everyone who wants to become foster parents to consider adopting children with HIV. It is not scary. Fear remained only in urban myths and, unfortunately, in the minds of some backward health workers. Our acquaintances adopted a child with such a diagnosis from an orphanage, and an old doctor in a clinic told them that they had given up on their lives. She scared them so much that they returned the child to the orphanage. It is necessary to fight not only HIV, but also ignorance.

Translated by Julia Frolova

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