Dwindling

Kyomanywa is dwindling, ebbing away before our eyes. For the first six months of his life he seemed to be thriving in spite of being born to an HIV positive mother. His mother’s infection was diagnosed through the Kwejuna project’s antenatal care. As she began coming to clinic we encouraged her to practice exclusive breast feeding (no other foods or milk), and then wean at six months of age when his antibody test was negative and he seemed to be healthy (the national policy). Each month of breast feeding carries some small risk of transmission. His mother followed our advice and took the hard step of denying him her breast, very counter-cultural in a less-than-two-year-old. And then his weight started to drop. We boosted up his nutrition thinking this was a side effect of weaning. But every month she would come back worried about his health, persistent in her instinct that something was wrong. So I repeated the test for HIV—it was positive. He must have been infected just before he weaned. We must have waited a week or more too long? With his constant fevers and weight loss he soon qualified to start anti-retroviral drugs. At least, I thought, we can turn him around now that we know what is wrong. But he keeps slipping. It has been a month and now he’s worse than ever, with a terrible whole-body rash, itching, dark patches with raised borders. Today he sat scratching, his mom able to distract him into smiles a few times, but mostly he cried.

And I want to weep too. I stopped two medicines that might be giving him an allergic reaction. We have almost no options for altering his treatment course, so are persisting with two drugs instead of three for HIV. I’m checking some pitifully inadequate labs and a chest xray—could we have missed a co-infection with TB? Kyomanywa dwindles and waits for us to figure it out, his spunky mother who loves him and keeps telling me that we don’t have it right yet, and me his doctor who feels like there should be someone else to turn to and ask for the right answer. There are plenty of happy stories in my ARV clinic, kids who turn out to not be infected, kids who are so much improved on medicines that their mothers are frantically chasing them down. But Kyomanywa isn’t one of them, and as I am leaving for a month I can only pray he doesn’t dwindle all the way out of this world.