By Pediatric Neurologist Volunteer,
Remember the days when you didn’t need an alarm to wake up? When you woke with the sun rise, and your body was so anxious to rid itself of sleep that it was insufferable to stay in bed? The song in your head is not one you heard on the radio and can’t shed, rather it’s the background music of your life. You knew that the day ahead was one to remember. One where you will experience the payoff of weeks, months, or perhaps even years of planning and anticipation. Possibly one in which you will meet challenges or opportunities you have never had before, ones you feel prepared to overcome, with meaningful experiences as your reward.
That’s what this morning was like. That’s what nearly every morning has been like during my time in Africa. At night, the darkness is absolute, an almost palpable heaviness to the air. The lack of sensory input gently and slowly turns the brain off. It is disarmingly relaxing, and I find myself in bed and asleep well before I had intended to rest. Come morning, the energy of the world changes with the sun rise. The light calls to action dozens of songbirds and crowing roosters. You can nearly feel the world waking up, and the call is hard to deny. Then you remember what you’re here to do, and it really is impossible to stay asleep.
The medical experience thus far dwarfs my time in Botswana. Morning starts with 8:30AM rounds. FAME Medical has just 6 general inpatient medical rooms, each with 2 beds. Despite the low numbers, the acuity and complexity of patients is impressive. Currently, over half of the admitted patients are children. We spend a particularly long amount of time with one child who became neurologically devastated over the past three months; I come up with some answers, but without significant testing abilities, I’ll never know if I’m actually right. The father, a proud warrior whose stretched earlobes and traditional garb could just as easily grace the cover of National Geographic, tears up at my explanation. He will not be the last person to receive bad news today.
The rest of the medical load, while significant, is African-casual paced. Today, two orphanages delivered half their children to our doors, having heard that for the first time ever, a pediatrician has come to town. I see five of them today. The experience is exactly what I have come for.
For two of the boys, I can make a diagnosis: muscular dystrophy. They will never walk again. It is not all bad news, though. A large percentage of families here do get the answers they've been seeking for a long time. Down syndrome, Ohtahara syndrome; in these cases, I can offer a somewhat clear picture of the future, even if it is not the one they had hoped. For others, they get confirmation of what they had suspected: that their severely weak, "disabled" child in fact has a full mind, capable of learning.
This is no small reward. You see, schools here are very limited in their resources. Any child with any somewhat significant problem is refused entry to school. As an example, one 10 year-old boy was refused entrance to school his whole life because of a very subtle tremor, and they came to meet me to get a note saying he was medically cleared for school. After TEN years! In a more heartbreaking example, a boy with severely dystonic cerebral palsy, where he has basically lost control over all of his muscles (including his mouth and face), has a very full cognition, as far as I can tell. When I asked his caretaker what I can help with, the boy replied, "I am a cripple."
Where schools have failed, the generosity of others have succeeded. He was taken in by a Norwegian man, whose name I can't pronounce, let alone spell (it sounds like Skroli, but I'm sure there's an umlaut or two in there). He has spent every cent he owns and has raised money from Norway to build an orphanage of sorts for children like him, children with significant physical handicaps but a lesser extent of cognitive impairment. He takes them in and teaches them, not just basic schooling but also life skills, with the hopes of one day reintroducing them to their families. So far, I have seen 7 of his sickest, and have given him half the money in my wallet to continue doing what he's doing.
Were it not for the FAME clinic here in Karatu and for Dr. Mike Rubenstein, the Penn neurologist who introduced me to the facility and is here with me now, none of these neurologically impaired children would have ever found the care they need. Thanks to their charity, they are on appropriate medications now, and being cared for by people with the right mentality towards disability.
Skroli will have many more children for me in the coming days. I hope I have the emotional wherewithal to handle them, and that I brought enough money to leave with a clear conscience.