Simon and Sylvia

through the curtains

I always worry when children come into my HIV clinic all by themselves. The majority of our children in Kenya have lost at least one of their parents by the time they start medicines for HIV, but I always hope for at least one parent or another adult who might have stepped in to care for the child.

At 13 and 14, Simon and Sylvia were among the many young teenagers navigating the trip to our clinic all by themselves; the waiting to see the doctor, the questions and exam, the trip for a chest x-ray, the waiting for prescriptions -- they handle that all by themselves.In many ways, Simon and Sylvia were quite similar to each other. Both have been infected with HIV since birth. Both lost their mothers in the last year to this same virus. Both have been taking the medicines for about 5 years to keep HIV at bay in their bodies.

And yet, they were so different.


Simon has not been told that he has HIV. Although he is entrusted with the responsibility of walking for almost an hour to get to the clinic all by himself, he is not entrusted with this secret. And Simon is full of worry. When I ask him how he is, the first time he says he is fine except for his cough. But when I ask him a second time, after we have talked about the challenge of remembering to take his medicines every day, he tells me that his "mind is sometimes full of worries."

"What are you worried about?" I ask softly. And he replies that he is worried that something is wrong with him and that he worries about the death of his mother. Without his father or another guardian to give me permission to talk with him freely about HIV, I cannot do what he wants, what he needs. I cannot tell him what it is that is wrong. I cannot talk about his absent mother, palpably missing from the chair next to him.

I try to reassure him that the medicines are keeping his body strong, that he is healthy and that he can continue to be healthy and strong if he takes the medicines. I tell him that his body is catching up after an episode last fall where he was quite sick. I tell him how sorry I am that his mother is not here. I tell him that I am planning to see him graduate from high school in four years and that he will need to make good plans for what he wants to do next. I tell him as much as I can without what he really needs - disclosure that he has HIV and frank discussion about what that means. I try to give him as much hope as I can without saying what I really need to say -- "You have HIV, but you can live a full life despite this disease."

Simon leaves the clinic with his worries.


Sylvia knows that she has HIV. She was told last year by her mother, with the help of one of the nurses in the clinic. When I ask her more about this disclosure, she confesses that she suspected for some time that she had the virus. Sylvia says that it was a relief to finally hear the words from her mother.

Her mother told her only a week before she herself died from this same virus. Naturally, Sylvia worried that she would die too. She has a grandmother, though, who gathered up Sylvia in the midst of her grief and whispered to her the words that she needed.

"You will live. You must have hope. You are strong." Whispers that shouted with love. Whispers that healed a broken heart.

Sylvia realized that, with the medicines, she is indeed strong. "With these medicines, I will live." She said.

Sylvia is in Form One, the equivalent of being a freshman in high school. When I asked her what she wanted to do after high school, she answered confidently, "I will go to university." Not, I want to go, but I WILL go.

"You will," I told her with a smile. "We will keep you healthy."

Sylvia walks to the lab to get her blood drawn with her head held high and a smile still on her face.

HADITHI = Helping AMPATH Disclose Information and Talk about HIV Infections.

HADITHI = "story" in Kiswahili.

We are beginning our second year of the HADITHI study evaluations for about 300 families in 8 clinics in western Kenya. In HADITHI, we are helping children like Simon and Sylvia learn that HIV is part of their own story, but that it is not the end of their story.

After our first year putting HIV disclosure counselors into the clinics for children like Simon and Sylvia, our team is working hard to revise the system by which we do our counseling. We are struggling over evaluations for our counselors and the best materials for counseling. My excellent study coordinator has been able to return to Kenya (post-emergency evacuation) to pick up this challenge once again. Our team of counselors strives to follow and support families through this process of HIV disclosure to their children.

Simon and Sylvia remind me exactly why we need to do this.

Posted at 14:53


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