Most of the children who I saw in the pediatric HIV clinic today
came with their parents or with the adults who have stepped into
the hole left by the death of the children's parents. Two came all
Two solo adolescents, a 13-year-old and a 14-year-old,
navigating the trip to clinic -- the waiting to see the doctor, the
questions and exam, the trip for a chest x-ray, the waiting for
prescriptions -- all by themselves. In many ways, they were quite
similar to each other. Both have been infected with HIV since
birth. Both have lost their mothers in the last year to this same
virus. Both have been taking the medicines to keep HIV at bay in
their bodies for about 5 years.
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 a spell 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
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 it, she confesses that she suspected for some
time that she had the virus, and that it was a relief to finally
hear the words from her mother.
Her mother told her only a week before she 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 of
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
Sylvia walks to the lab to get her blood drawn with her head
held high and a smile still on her face.
My team and I are putting in many, many hours to train
disclosure counselors for the clinics, to develop useful materials
for counseling, and to follow and support families through this
process of disclosure to their children. Simon and Sylvia remind me
exactly why we need to do this. Worry vs. Confidence.
- Doctor V in the HIV clinic this morning,
as photographed by a cute 8-year-old who was very keen on using my