The day started powerless, the electrical supply to the guest house, not my self-confidence, so in the dawn’s light I donned a clean shirt and pants in anticipation of my first day on the palliative care team with Professor Randi at the helm. After swallowing my daily meds, daily bread, and daily eggs, I grabbed my stethoscope and set off with the Professor to find the Palliative Care team at the hospital.
Nervous we would be late for our 9 am pre-arranged rendezvous, I pressed hurriedly forward, bristling that Randi was sauntering casually well behind me. Despite my urging, she wouldn’t speed up. At 9:45 we were still waiting for the team as Randi sat smugly on a bench, having learned about African punctuality last year.
By the next day we had seen 12 patients, our pickup truck having bounced through cratered dirt paths to a mud hut or to the backroom of a storefront selling faded plastic chairs, or to a homemade brick house (and I mean both homemade bricks as well as a homemade house.) The travel and the visits were at times disorienting, and usually nauseating. Breasts that had been replaced with lumpy creased spackle of tumor, a leg mordantly altered by elephantiasis, pocked with a leg ulcer swarming with flies desperately fighting with each other for the meal of pus, or an epileptic girl that had seized herself into the cooking fire after running out of her medications. My stomach retched and my heart ached for the nearly living and the barely living, bargaining with their bad fate with an Ibuprofen here, an antibiotic there.
It was on that second day that we were brought to a clearing, a young boy lying on a reed mat on the dirt outside a small mud cooking hut. He lay in fetal position on his right side, mouth agape to catch air between the smothers of smoke from the cooking fire a few feet away. The only sound was chickens scratching at dead leaves nearby.
Upon hearing our truck, his mother appeared in the doorway of the larger living hut across the small dirt yard. We had been told by the Palliative Care team leader, Prose, that this was a boy they had first seen last week for congestive cardiac failure and had advised a low salt diet. As I stood back as the documentary picture taker, the team approached the boy. Randi took the camera from my hands and told me, “This one is yours.” I weakly protested as I pulled the stethoscope draped over my neck and knelt over him. Congestive heart failure in a child? What do I know of CHF in anyone under the age of 70? I know they should have edema – None. I know they should not being able to lie flat – but here was this 10 year old horizontal in the dirt. I moved to listen to his heart, and anticipating, the mother dragged the boy to a sitting position to obviate the need for me to bend over him. I listened to his lungs (clear) and for a murmur (none.) And then it occurred to me. The mother had had to drag the boy to sit up. He didn’t do it himself. My thoughts stepped back, no longer seeing him as just a kid with a heart problem. I looked at him lying, slumped in his mother’s arms, and now saw his right arm lying limp, his right leg contorted in a position I would not tolerate if it were my leg. I reached for him again, with my hands, not my stethoscope, and examined him fully, now seeing a boy paralyzed on half his body, unable to sit up without his mother holding him, unable to straighten that twisted leg, unable to grasp my finger. I straightened his leg and my own leg felt relief, although the child’s expression never changed, mouth gulping for air, a white coated tongue protruding, eyes wide open and unblinking.
At some point, old records were produced from a brown envelope the mother:
2011: Mulago Hospital in Kampala. A normal echocardiogram. An abdominal ultrasound: portal hypertension, an enlarged liver and spleen. A CT scan: ring enhancing lesions in his brain consistent with a fungal infection, “probable toxoplasmosis.” One of the reports listed him as HIV positive, that crossed out and hand written above it, NEG. A prescription for sulfadiazine and pyrimethamine.
How long had he not been able to move his arm and leg? About two weeks. Would she let him be admitted to Naggalama hospital now? I have no money. Randi and I look at each other. It will not cost you money. Please not today? Tomorrow we will bring the ambulance.
As we drove away I wondered what we would do tomorrow with no echocardiogram, no CAT scanner, no neurologist, no infectious disease specialist, no blood tests beyond a CBC, HIV, LFTs. Shifting uncomfortably, I felt powerless.