“Hammered in a hysterics – HIV is not going anywhere”. Parents of children born with “plus”

In Perm before the Day of struggle against AIDS public Fund “the Mirror”, which works with various vulnerable groups, arranged for its clients and their children a master class on cooking pizza. Most of the people here adults and some children, some from birth, live with HIV. The boys rolled out the dough with rolling pins. Everyone chooses the stuffing that is in his dish. Before you send the circles to the furnace, the participants stand up together to be photographed. “Smile and wave!” presenter classes, and the owner of a pizzeria where everything is happening, Victor Gorokhov. Under the General laughter, he adds that it is possible and not to wave, and the workpiece will fall from his hands.

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When pizza is ready, boys and girls take turns coming to the coordinator of the Fund “the Mirror” Inna Lyubimova and handing her the still warm pieces. The woman thanked each child, addressing him by name. Such events different workshops, going to the movies and just walking – as a self-help group, explains ina. They parents communicate with each other and with representatives of public organizations. In that is an attorney and psychologist, about the meeting which you can agree right here.

In the Perm region with the live virus 309 children, statistics in the AIDS center in the region. This is less than one tenth of one percent of the total child population. Of these, 282 children have been diagnosed since birth (the other got it sexually or through injecting drugs). Most families with such kids in the “Mirror” does not address, says Inna Lyubimov. Although the Ministry of health of the territory is agreed that doctors should tell about this organization. Those who still comes to Fund, complaining about the biased attitude in clinics or kindergartens. To defend the right ready-made units. Some hide the diagnosis from the child – that he accidentally told him not told.

“Not always was a good mom”

“I – it is clear from [received HIV]. And she was, it turns out, a choice without a choice” – says about her six-year old daughter, born with a positive status, 39-year-old Irina (the name is changed at the request of the women). The girl sitting next to you playing phone. Mama talks about herself and about her as it is – saying the words “HIV”, “drugs” and so on.

The first injection drug Irina did in 13 years. Since, as explained, were periodically used illegal substances, but “addiction never arose”. Graduated from school on one five, in addition to the four in physical education. Went to the Olympics her parents “were recorded in the academics.” Said that we need to go to College, and she wanted to become a hairdresser. To higher education she tried twice, but in both universities did not finish my studies.

Shortly before the thirty Irina gave birth to a boy. He had a heart defect, which in the year of age the baby underwent surgery. After it, he lives with cerebral palsy.

Teen can’t walk, so mom is always with him. His father, according to Irina, told her: “You can give up your life: work, leisure, and I’m not.”

Man lives in a different family, but translates to son money. Even when the boy was in the hospital after surgery, the woman met the future father of her daughter. He was visited by his mother, treated the same. Met him on the thirst for drugs: “Our brother addict can always learn,” – says the interviewee.

When Irina was pregnant the second time, she continued to take drugs, then it is synthetic. HIV test was negative. But the next day after birth, when we again did analysis into her chamber went “five in white coats”. “I knew,” says the woman. “I wasn’t always a good mother, she admits. Is (HIV – approx. ed.) was predictable. Surprisingly, this had not happened.” The diagnosis was confirmed and her daughter.

All newborns with the virus get it from their mothers, explains Inna Lyubimov. This occurs if before pregnancy and during it the woman is not taking therapy. Or if after birth the child she is feeding him breast milk. In other cases, the risk of infection less than percent.

“It happens that the woman does not know about the diagnosis and therefore not receiving therapy, – explains the representative of the Fund “the Mirror”. – Or reject it: drugs can cause allergies and other adverse reactions. It happens, and that from lack of money – and dry mixes are not cheap – the mother starts to feed the son or daughter Breasts.” In public organizations can be borrowed for free meals for infants.

Irina eventually decided: “Hammered in a hysterics – HIV is not going anywhere”. To difficulties, she said, prepared her older child. It is under the family “adjusted” so far: the boy needs to feed, to help him move and walk in closet. After surgery, the son lost sight, and the doctors were convinced the woman that it may be forever. Irina, according to her, a few months “every day, drove before him a bright orange parrot”, and the sight began to focus. Even the doctors thought that the son is not able to smile due still muscles around the mouth. Irina also regularly began to give him massage the face with your hands. In the end, the expression a little bit, but began to change.

Band-AIDS against HIV

Girl instead of pills first saw suspension – children’s treatment option. Now it’s one suspension and two tablets in the morning and evening. Therapy together with her adopt parents, so says the woman problems to get used to it was not. Six months ago about her illness with a girl talk to a psychologist in the AIDS center: to see him suggested by the pediatrician during your next appointment. But before that, according to Irina, the family openly talked about things.

Medication morning and evening, as well as analyses every three months – the only difference of the child from other children, said the woman. “Don’t fuss over it,” she explains. Kindergartens, and the daughter walks in on them with three years, because of illness, didn’t miss once.

Doctors in kindergartens and schools should not ask about the diagnosis pupil. But the map from the clinic that Irene asked the first garden was a stamp of the virus. Inside was a statement from the AIDS center. Two months later, a woman, as usual, sat at home with her son – she called and said that her daughter “landed in the infirmary,” and asked her to come. Irina was there three hours – all the while the girl sat in the infirmary. Her face and hands were covered with band-AIDS. It turned out that the children fought, and she left scratches on his face. “You know about the disease,” said an employee of the garden. Other children and educators – and the diagnosis of the child knew not all interested in why his daughter Irina so much attention. So its status as a learned almost everything.

However, even the risk of infection after, say, a common razor – if first one and then the other they were cut – hypothetical. It claims in an interview with the online magazine “Star” the chief physician of territorial Department of the AIDS center Eugene Samoletov. Not to mention the scratches got a daughter Irene. Under the Criminal code for disclosure of diagnosis can be up to four years of imprisonment. Irina thought about how to draw medic from kindergarten to justice, but then decided not to “waste time”. That it hurt the girl the mother did not complain, and the woman didn’t want the problems began.

Another time her daughter was riding on a hill, and hit hard, to the blood, bit my tongue. In the emergency room said he needs to heal himself. Warned that possible bleeding from it during the meal.

Seeing all this blood, from kindergarten called again and suggested that the next month the child spent at home.

Irina returned to the emergency room. Told about HIV and girls and asked for a certificate of no contraindication to attend preschool. “The doctors laughed, but said if you want help, make,” – says the interviewee. In the end, this fall the woman found her daughter another garden. There is no such problems.

The problem is not the virus, and in relation to it

35-year-old Alexander (name changed at the request of the heroine) who is raising nine-year-old son with HIV, found out about his diagnosis six months ago. Then he was in the hospital with a sore throat, and did there tests. How the boy could get it, mom doesn’t know. Suggests that it happened in the spring, during a visit to the dentist. To prove the guilt of doctors would be difficult, thought the family, money for a lawyer it does not – so the trial did not achieve. Head of the epidemiological Department of the AIDS center of Prikamye Rashid Gibadulin told us that cases of infecting children with HIV during blood transfusions or operations in the region is not fixed.

Alexander hides the status of a son in the school. To about it never mentioned, not talking about the virus to him. The pills that son needs to drink two times a day, the parents explain the effects of angina. According to the law on HIV baby doctors can only tell to the parents – to him they can say it only with the consent of legal representatives.

When recently the school requested information about the General state of the student, Alexander went to a private pediatrician. The woman explains that her son’s lymph nodes are enlarged, which is normal with HIV. But in a normal clinic this can “underline the attention.” From private owners, said the interviewee, is more assurance that will do everything according to the law. Look at the extract from the AIDS center and will write a certificate without mentioning her HIV.

In the Moscow public Foundation “AIDS.CENTER” claim that the sooner a boy or girl learns about her status, the better. “The later tell the child about the diagnosis, the more critical changes will occur in his picture of the world,” – said in a public organization. Difficulties – more for the HIV but the attitude in society is and open families, and those who hide health information, according to the Fund “the Mirror”. But, I add here, the more a person knows about himself, the less he has unjustified fears, and the more he is willing to be attentive to their health.

Mikhail Danilovich

Photo courtesy of the Fund “the Mirror”

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