Innocent died this morning. She was six years old. She died of sickle cell disease and anemia and poverty and family stress and too little too late.
Her father Kapu does gardening work for the Massos, as he has for a decade. They have watched him grow from his early teens into his mid twenties. They have watched him become the father of three children, Innocent being the oldest. The second died on Christmas Day two years ago. The third is a 4 month old baby. Kapu’s mother died on Friday. Karen went to the burial that day and held Innocent on her lap through the whole event, a bright and eager six-year-old girl whom no one expected to be close to death herself. We have possibly the highest prevalence of sickle cell disease in the world here in Bundibugyo, and its victims are too numerous to count. Kapu and his wife had done a good job of steering Innocent through many crises, but I think the events of a family death and burial over the weekend probably threw them into disarray, and no one noted the signs of her impending danger.
I found her this morning having just arrived at the hospital. The alert staff immediately sent her for a check of her hemoglobin and the lab result was 3.3 gm/dl, a value incompatible with life. In sickle cell disease a child can literally bleed to death internally, red blood cells melting, clogging the spleen, disappearing. She was already hooked up to a transfusion when I entered the ward. I immediately heard her labored breathing, saw her lying unconscious on a mattress on the floor, supported by a relative, clinging to life by the merest thread. In spite of mobilizing the nursing staff to give her antibiotics and antimalarials in addition to the blood, she died within the hour. I’ve rarely heard a cry more despairing than this mother’s. Perhaps being near the anniversary of her other child’s death, being left with only one of the three, perhaps she had allowed herself such hope that the treatment would work, I don’t know, but she fell apart.
By afternoon the clan had dug another grave by Kapu’s mother. Most were still at the home observing the four day period of mourning. I arrived just after the coffin, mostly to support Karen whom I knew cared deeply for the family. She sat outside weeping and I joined her, like the other women, sitting on papery dry banana leaves with our legs stretched in front of us, wet sand scratching my legs, leaning against the house. Many of the friends we’ve made over the years were there, the diverse network of relationships that run through the community. When one of Kapu’s age-mates, Kawa Vincent, who is now a primary school teacher but also used to be a little boy hanging around our homes, gave the requisite “report” on Innocent’s life, he got choked up. Seeing this young man struggle to speak moved many of the women (including us) to tears afresh. The hardest part was when the little cloth-covered coffin was lowered into the fresh muddy hole, and the men began to push the excavated dirt back in. Loud, thunking splats as the finality of the act echoed. At that point Kapu broke out in heart-rending cries (not usually seen from the men at these events) and that released Karen’s grief too, so that like the other mourners she just had to sit on the muddy ground and sob.
Death in Bundibugyo is death unadorned. We sang hymns, but while sitting in the dirt, with food scraps covered with flies lying nearby, the hymns giving counterpoint to the wailing of the closest relatives cradling the body throughout the ceremony. There is no illusion that death is a sanitary medical process—here it is sorrow, and filth, and gasping weakness, and empty hearts. Sitting on that ground I could only remember that some of the other patients at the hospital, as soon as she died, did a better job of comforting than I did. They surrounded the mother and said “she’s with Jesus now.” The more bleak the death the more important the hope of Heaven becomes.