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Alice in Wonderland – That Doesn’t Exist

This story started with deep love and led to an HIV-infected mother and child. A peer counselor came to help. The story continues.   The…

This story started with deep love and led to an HIV-infected mother and child. A peer counselor came to help. The story continues.
The geographical names and names of people in this text have been changed to protect confidentiality.
The family was born out of great love. Victor met Elena 10 years ago in the outskirts of a city in the middle of Russia. Met and fell in love. She also fell in love. Such couples are happy in their own way and unhappy in that same way…
Elena’s first pregnancy occurred immediately after their wedding. Little by little the family built their house, waiting for their firstborn. In the sixth month of her pregnancy, Elena was tested for HIV. The result: positive. She was shocked and completely convinced that it wasn’t accurate. Victor was also tested for HIV and his test came back negative.
No one, neither with Elena nor with Victor, ever discussed the issue of accepting one’s diagnosis in their small city. Especially not 10 years ago. Elena was put on the registry at the AIDS center, was scared, and was given antiretroviral therapy and sharply scolded to only give birth in a special maternity ward. Elena took her medication regularly. But Victor regularly was looking for a cure. Any information that stated that the pills are destructive chemicals immediately led to the refrain: “AIDS doesn’t exist, it is to benefit pharmaceutical companies, you’re being poisoned, you’re poisoning our unborn child!”
In the eighth month, Elena felt very unwell. In her own words, “the child started to burn inside me”. The woman was operated on and fortunately the child was born alive. Elena did not breastfeed the baby, she simply didn’t have any milk because of her nervous system. After a year, the HIV antibodies left the baby. The whole family relaxed. They started to live as before.
Two years later, she was pregnant again. Scared from her “bitter” experience, Elena decided not to visit neither the gynecologist nor the AIDS center. She silently listened and tried to take in Victor’s reasoning that this time “we won’t go there, no pills”. In the third month of her pregnancy, Elena finally went to the gynecologist, and again was tested for HIV. The result: positive. Again the woman, now pregnant with with her second child, was sent to the AIDS center where she obediently took ARVT pills, carried them home, and put them in the desk drawer. Victor forbade her to take that “poison” and methodically repeated that Lena did not have and could not have HIV. He himself didn’t get tested for HIV a second time and had no intention being tested again.
The second pregnancy also ended before term. The operation was conducted in the same maternity ward as the first, preventative measures were taken in the birth and for two weeks nurses in the hospital personally gave the infant girl Retrovir. And Elena disobeyed her husband for the first time. She didn’t breastfeed the baby, telling her husband that once again there was no milk. The first test results for HIV antibodies showed that the baby girl was positive. The family prepared to battle the pharmaceutical companies, but a year later a miracle happened! (At least that was what the couple believed.) The results for HIV antibodies showed that the girl was negative. The parents did not know that the preventative measures that the doctors were able to take in the maternity ward to prevent transmission from the mother to the baby and the follow up antiretroviral treatment most likely were able to defend the child from HIV infection.
Last year Elena and Victor learned that their family would grow again. At that time the woman, with two children in tow, suffered herpes outbreaks and battled pneumonia twice – illnesses that are associated with HIV infection.
At that time there were many problems in the family: their house needed fixing, there was no work in their city. Elena understood that this third time she should register her pregnancy at the obstetrician’s office as early as she could so that she could receive the benefits for having a third child and also receive the title of a “mother of a large family” so that she may receive financial support for the family. As a result, she found herself meeting with a doctor who, upon confirming the pregnancy, proposed that Elena immediately go to the AIDS center for clarification: what if truly her HIV infection somehow magically disappeared?
After Elena saw from the results of the test that miracles don’t happen, she was frightened for the first time. Her results showed that there were more than three million copies of the virus in her. With this number she returned home to tell her husband her firm decision: to take the medicine “just in case”. Victor listened and asked, “If you have HIV, why haven’t I been infected, why are our first two children healthy? It’s all lies. If you are going to kill our baby, I’m taking the older children and leaving.” That, as usual, was followed by insults to his wife, humiliation, statements that she is a “murderer” and that she “is harming an unborn child”. On the following day, driven to despair, Elena returned to the AIDS center and Victor accompanied her as she signed her refusal to take ARVT and preventative medicine.
At that time, the Healthy Mother, Healthy Child project was launched in their city. As part of the project, once or twice per week a peer counselor – a woman who has experience not only living with HIV, but also in giving birth to a healthy baby – worked at the AIDS center.
Elena didn’t visit the AIDS center. She was brought to the hospital by an ambulance and the delivery was planned. Preventative measures to prevent HIV transmission to the child were fully conducted. The girl was named Alice, and two weeks after giving birth, Elena went home with her daughter.
Over the course of a month, a peer counselor from the Healthy Mother, Healthy Child project discreetly visited Elena while her husband was at work and persuaded her not to be afraid to get Alice tested at the AIDS center, told her about treatment and presented examples from her own life. Elena agreed to bring Alice to the AIDS center. The test results shocked even the most experienced pediatricians. The viral load of both the mother and the child was over 6 million copies. The girl was extremely weak but significant eczema, herpes, and even papilloma on the child’s face did not not convince the father that HIV exists.
Thanks to the support from a peer counselor, Elena and her three children were hospitalized at a local regional hospital. The diagnosis of HIV was only given to the mother and youngest daughter. Elena understood at last that the disease exists and that miracles don’t.
A month after starting comprehensive treatment, the pediatricians literally danced from joy from Alice’s progress. Her viral load had reduced to 300 copies and clinically the child appeared much better although her CD4 count remained low — 53 cells. After starting treatment, Elena saw her daughter’s progress with her own eyes and noticed her own improvement.
Then Elena told her own family – her mother and brother – about HIV. Meanwhile Victor, as before, stated that he was tested for HIV and the result, according to him, was once again negative. Yet he didn’t show anyone the verification…
Elena decided that enough is enough. She currently is receiving social and psychological support, including through the Healthy Mother, Healthy Child project in her city. The project peer counselor calls her and helps her maintain adherence to ARVT.
And what about love? Now Elena speaks of Victor, “He’s stubborn. No one can talk sense into him. And I won’t try anymore. I need the strength to carry my children.”
P.S. In November 2016 our organization began the next phase of the Healthy Mother, Healthy Child project. You can read more about what was accomplished in 2015-2016 as part of the first phase in the following article: One project can change the fate of many people.
In 2017 the project is being implemented in the following cities: Vladivostok, Ekaterinburg, Nizhny Novgorod, Saint Petersburg, Tumen, Khabarovsk. This stage of the project is unique in that in the AIDS centers in all the listed cities HIV peer counselors have appeared on an official basis.
Author: Natalia Sukhova, Healthy Mother, Healthy Child Project Coordinator.

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