Thanks to Benjamin, who was born with HIV, his mother and father have learned to live positively. Benjamin now has a new baby sister who was born free of HIV.
Benjamin was born with HIV thirteen years ago, but his parents received the sad news near his second birthday.
I can still remember Vanessa, his mother, and her anguish when she was referred to the hospital where I work, in a poor suburban area near Buenos Aires, the capital of Argentina. Vanessa would not stop crying. She felt guilty, she was angry, she could not understand it. Omar, her husband, was always silent. He asked no questions, he would not cry.
By the age of two Benjamin had suffered multiple infections and that was when he was diagnosed with HIV. This was also how his parents found out they were living with HIV.
Accepting an HIV diagnosis
According to all guidelines, children need to start therapy as soon as possible. Benjamin needed lots of medicine to improve his health, help him thrive and ultimately to keep him alive. His parents also needed such medication. But it took some time until Vanessa and Omar accepted they were living with HIV, as did their beloved Benjamin. During what seemed like endless months, they would not take antiretrovirals, or give them to their child. It worried me: silence and neglect is a hard enemy.
A year after their diagnosis, Benjamin and Omar were admitted to the hospital with tuberculosis, which is still the first killer for people living with HIV. Since then, all the family started treatment. But silence still surrounded them. Despite more than thirty years of the fight against HIV and stigma, disclosure of status remains difficult for many people.
These days Benjamin is a healthy teenager and doing well at school. But for years he has not been able to go camping or sleep over with friends or relatives, because his night time HIV pills were given only by his mother. Nobody, not even Benjamin, knew why he was taking the medicine. He was told they were vitamins, same as Mom and Dad were taking, in order to be healthier.
Any time I talked about disclosure of Benjamin’s status with Vanessa, she would start crying again, just as she did more than ten years ago. She was still feeling guilty somehow.
New life brings family hope
Then in July 2013 Vanessa found out she was pregnant. This time she is taking medicine to prevent passing HIV to her baby. She now has an undetectable viral load, which means her HIV is under control and is not found in a blood sample, therefore the coming baby will be free of HIV.
This good news has helped Vanessa realize the old enemy of stigma and silence needs to be tackled. The other week Benjamin asked again: “Mom, why am I taking so many pills, as you and Dad do?”
And Vanessa and Omar answered without tears: “Do you really want to know why? We take all these pills because we suffer from an infection, but since we learnt it when you were born, now your little sister will be healthy. Thanks to you, Benjamin, we found out we could save our lives while on this therapy, and your sister will not need any medicine. Benjamin, you saved our lives.”
Vanessa gave birth to a little girl on 4 April. They have called her Elena, after me. When I heard, I could not help it, I started crying. Working in the field of HIV can bring you to tears, but sometimes they are tears of joy.
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