rotating header

Tuesday, June 14, 2011


Most of my patients are less than a month old, and less than a few kilograms in size. Today though I was called to the outpatient clinic to help the excellent Dr. Sarah there evaluate a very complicated patient, Simon. This 9 year old found his way to Kijabe to see the also-excellent plastic surgeons, because of an apparently erosive lesion that was destroying his face, thought to be cancrum oris (a nasty bacterial infection). His desperate situation had attracted the help of someone who hooked him up with a Safaricom sponsorship for surgery. Only when he came, and our doctors evaluated him, it turned out that the lower left side of his face has not been destroyed by a tropical disease, but by his own picking and scratching. He's mutilating himself. And the surgeons did not want to operate until someone tried to stop this behaviour. Me? Not likely, but it you're known as the paediatrician, then the desperate cases come your way. I admit that I entered the room and saw a child that I assumed was completely devastated since birth, and I was only thinking of how to get back out, wishing I knew of some magic-buliet-sedating drug to put this kid on.
But I didn't know any magic medicines, so I sat down with Dr. Sarah, and started to ask questions. Shockingly, this child was completely normal until two years ago. He was a 7 year old in second grade, with friends, playful, and learning to read. He was cared for by his single mom, and no doubt the center of her life and hope for her future. Then he came down with TB meningitis. He escaped with his life, but lost his vision, and use of his left side. He's blind, partially paralyzed, and has a shunt for post-infection hydrocephalus. To survive, his diminutive mother sells charcoal near her house, but when she does, she leaves him there alone. And when he's alone in the darkness of his world, and hungry, he starts to pick at his face. The sensation was an antidote to the boredom and hunger, and became addictive. Now his jaws are scarred so that he can barely open his mouth to eat. And his dear mother, who looks like she doesn't weigh more than 90 pounds herself, became more and more desperate to help him, and carried him here on her back.
When I realized Simon was blind but not deaf and not mentally impaired, I took his hand and introduced myself and started talking to him in Swahili. And he answered me in perfect African-school-English, "how are you?" He tried to smile some, and to answer questions from Dr. Sarah. He likes chapatis and avacados and balls and listening to the radio. Belatedly I realized we are dealing here with a little boy, a person, locked into his blind and immobile world, and desperate for attention. I called the nutritionist to come and help hook him up with fortified porridge and plumpynut to get calories past those clenched teeth. We made a plan with the mom for music (which she had noted stops his self-mutilating), toys, things to do and touch. We made a plan to use rewards for time periods when he doesn't touch his face, a positive feedback system. And we'll see him again in a month to see if any of this is helping him heal enough for surgery. Dr. Sarah, competent and caring, thinks she can get the same Safaricom sponsorship to perhaps hook him up with an organization for disabled people, to find out if there is any school for the blind he could attend. I was reminded of Kabajungu Grace, the little blind girl that several years of Bundibugyo summer interns and I bonded with. She and Simon would have made great friends.
Something about this weak but sincere mother and her trials really touched me. Or about Simon himself, a normal little boy trapped inside a sightless and still body, with a frighteningly skull-like disfigured face but a soul that reflects God's glory as much as mine or anyone else's does. Praying now that he turns a corner back towards life and health, and longing for the full-healing touch of Jesus to make all things (his brain and his face) new.


Amy P said...

Hi Jennifer,
I'm sorry it's been so long since I've been in touch but after reading this post I had to respond. It just breaks my heart. If you still have my email please drop me a note so I can find you...I've lost yours in the transition. I'm still in IL, same email address. Thanks and I will be praying for sweet Simon and his mom.

Heidi said...

Oh, Simon! Praying for you - body, mind and soul!