"Dr. Vreeman," said my study coordinator worriedly, "We have
never heard you speak this way."
I had just hung up the phone with person in charge of the
intensive care unit at the hospital. When this person told me that
my very sick patient could not get one of the ICU beds that he
desperately needed because he has HIV, the seldom-used,
very-angry-Rachel voice came out. In English and in Kiswahili.
(Sometimes angry Kiswahili works better here than angry English,
even though I'm not very good at it.)
"There is no reason that his HIV should keep him from an ICU
bed!" I had said loudly and forcefully in both languages. "He needs
At this point, I had made several trips back and forth between
the wards and the ICU and countless phone calls, and my frustration
was mounting as I tried to figure out a way to get my young
HIV-infected patient what he needed… Just because you have HIV does
not mean that we should not try everything reasonable to keep you
alive. Francis needs an ICU bed because we need to wollop his body
with medicines to stop his seizures and they will probably stop his
breathing for a while too.
I almost hate to describe Francis because he looks like exactly
what you would imagine when I say I work with children with HIV in
Africa. He is emaciated, tiny, frail, sick, and covered in terrible
rashes that have disfigured his face and head so much that he wears
a hoodie pulled over his head to hide as much of his face as he
can. For the past one week, he has been having seizures - seizures
that are getting worse and worse and worse.
I much prefer to describe the children who bound into our
clinics happy and healthy and laughing. The children who are going
to school and coloring and doing math exercises on the desks while
they wait to be seen. Most of the children in the clinic this
morning looked like that. Most of the 15,000 HIV-infected children
that we care for in Kenya look like that.
But there are still a few who look like Francis - desperately
sick and alone in a rickety metal hospital bed on the crowded
hospital wards. Francis is 13 years old, and he has no immune
system. He has been taking HIV medicines for the past 5 years, ever
since both of his parents died. He has not had anyone to look after
him since his aunt died 2 years ago.
On his own, Francis has not done so well with the medicines, and
his body no longer has the soldier cells that it needs to fight off
infections. I suspect he has a bad infection in his brain that is
causing these seizures, and we have been pumping one medicine after
another into him in our best attempt to fight whatever infections
are taking over his body and to stop the seizures.
I am trying my best to help his body fight. I heard one of the
nurses on the wards talking in Kiswahili about how "this AMPATH
pediatrician will not allow this patient to be."
True. I still think we can keep him alive. I still want to fight
for him. And I do not want him to be alone.
Most of the time, my job entails trying to make our system of
HIV clinics work better for the 15,000 children we follow
long-term. Sometimes, my job is make an impassioned, even angry
plea for an ICU bed so that a frail little boy can get one last,
big shot at the medicines he needs to make these seizures stop.
In my last post, I was thinking about what it means to "stay
near them", what it means to face broken systems and broken bodies
and do what we can to enter in, to come alongside, to care, to
help. Today, that looked like getting an ICU bed and special
medicines and the right people to look at Francis.