A Son's Sickness, A Father's Story

Sickle Cell Disease is tragically common here. While you may have studied it briefly in high school biology, I'll spare you a discussion of the genetic basis of the disease. Boiled down, it is a genetic disease that leaves the patient with extremely low levels of hemoglobin, so that the heart and lungs have a hard time supplying oxygen to the body. In the U.S. it is a manageable disease. Here it is not. I see hundreds of anemic children with SCD, and I can't think of a single adult with it. You will understand the implications of that.

Aliganyila is my mental image of Sickle Cell Disease. Distended abdomen, stunted growth, big yellow eyes, stick-thin arms and legs, pale palms, malnourished body, frizzy discolored hair. That look, to me it says "sickle cell." He is the embodiment of the disease, as far as I have experienced it. He is also a wonderful boy, playful and amiable, the son of a friend of mine and the nephew of my best Ugandan friend. Jennifer says that his life has been tenuous since he was born. One emergency blood transfusing after another, visits to the hospital or the Myhre's at all hours, rushed trips to the district hospital to get the right blood type, always near the brink, sometimes farther and sometimes nearer, but never comfortably distant from death. A few weeks ago he came to the heath center desperately ill. Heidi told me he had a foot in the grave, and that there was no blood of the correct type anywhere in the entire district. It was supposed to arrive the following morning, but it seemed unlikely that he would survive the night. I went down to the health center to visit him, and it was physically painful for me to see him in the condition he was in. He lay on his side, his breathing rapid and labored, his racing pulse visible in his neck, as his lungs and heart tried desperately to get enough oxygen to his body. For him, just surviving was like running a marathon. Even lifting his head was too monumental and exhausting a task, though he managed to lift his hand a few inches to meet mine as I sat with him. His hemoglobin was just above 2 - for comparison, I would be rushed to the hospital if mine dipped below 8. Just about any child in the States would be dead around 4 or 5. Aliganyila probably hasn't been above 6 in his entire life, with 12 being considered normal. He simply could not get enough oxygen, and he couldn't last long in that state. I don't know if I have ever prayed for anything as fervently as I prayed for Aliganyila's life that day.

Before I continue, I need to mention his family. His father is a friend of mine who lives just down the street - I've eaten meals there and stayed a night or two at their house. He has several children with SCD. About a year and a half ago, before I arrived, one of his sons died of the disease. Then less than three weeks before Aliganyila was admitted at the health center, another son with sickle cell died. A friend told me that he has lost 6 children. And now, with Aliganyila near death, he was facing the prospect of losing three sons in 18 months, and two in less than three weeks. That thought floored me. I can't even wrap my mind around it. I simply have no context that allows me to understand what that would be like. The horror and tragedy of it brought tears to my eyes and a knot to my stomach. I cannot really describe how I felt; horror, anger, pain, doubt, and many other emotions at once. I looked into the father's eyes, full of despair and tears.

Eventually, the blood arrived, and Aliganyila held out long enough to get the transfusion he needed. The next day he was sitting up in bed, and smiled at me as I greeted him. He was alive again. It turns out that at that point, his hemoglobin was still below 4, but his body is so accustomed to the anemia that he was looking pretty good. He received three more transfusions over the next 2 days, but he never got above a hemoglobin of 5, our usual benchmark for discharging a patient. One of the greatest moments of my time here was playing with him one day when I walked into the health center. I held out my fists for him to guess which one I had something in, and he laughed and laughed with embarrassment and chagrin as he guessed wrong 5 times in a row, before finally getting it right and finding the 100 shilling coin in my hand. The smile on his face, the laughter in his eyes, and these coming from a boy who was so nearly dead less than 48 hours before, were some of the most beautiful things I have ever seen. And days later, he was back up at my house playing with the other boys.

He is still sick. This disease will never leave him, and as I mentioned before, I don't know of anyone with sickle cell who has survived to adulthood. His prognosis is not good. But seeing him return from the edge of death to his normal, smiling, happy self brought joy to my heart. His father is relieved, though still scared. How could he not be? I'm left to grapple with hard truths and conflicting emotions. The juxtaposition of joy and sorrow, sickness and healing. The suffering of a father that is too great for me to fathom. A wonderful little boy whom I love, for whose life I am now always afraid. A good God, a God of wholeness, and a broken, painful world, full of suffering. One thing I know: my face lights up every time I see Aliganyila, a loved one back from the edge of death.