Sickness Unto Death

   Some NGO’s will assist HIV or tuberculosis (TB) patients in getting their medicines but they are often irregularly provided. For example, Helen is a widow who has AIDS and antibiotic resistant TB but was not been admitted to the Kenyatta National Hospital charity ward because she could not come up with $50 for a bed. How could a hospital designate her indigent and then insist on charging her $50 to be admitted? Although it flies in the face of logic, the hospital triages charity cases on a first come, first serve basis, not on the severity or infectiousness of the condition; unless, of course, one has $50. Her sister, who lives in the rural “upcountry,” is the only family member who can help her. There is no such entity as a “vising nurse” in Kiambiu. Helen also has four children, is completely bed ridden and her home is so tiny that her sister and children sleep under her bed. The only other piece of furniture is a small settee. We visit her, gloved and masked, bringing her rice, porridge, cabbage, kale, tomatoes, onions and a few eggs. She’s too weak to speak but she looks into the bag of groceries and tears stream down her face.

   Because of the hospital’s refusal to admit her, she has likely exposed her family and everyone with whom she comes in contact to TB. She is physically wasted, not just because the diseases are ravaging her but because she has so little to eat. Without decent baseline nutrition, it is doubtful that she will be able to keep down the antiviral meds if she is receiving them. Even if she does, her body may not be able to utilize them effectively in her state of malnutrition. If the availability of the drugs is irregular, she may develop immunity to the ARV’s. When she dies, she leaves four children and a sister who may well become as sick as she is. In the meantime, she is a “typhoid Mary” and there is nothing she can do about it, no doubt increasing her feelings of guilt and mental anguish.

   Burial will be another problem. Funerals cost money. When a relative dies, everyone must contribute to the burial. Casket makers are everywhere. But even the simplest casket and burial spot is a financial burden on the living.

   A very small, thin 19 year old named Jackson has the most beautiful eyes. He comes to one of our kids meetings, looking shy, his eyes rimmed with tears. He was the first Leo Community orphan and technically “graduated” from LECDEN at age 18. But as he lowers the jacket that he has pulled over part of his face, he exposes a huge, disfiguring facial tumor. It has been growing steadily since he was 5 years old. Its impact on his life has been profound, preventing him from going to school since he was eight because the children became increasingly afraid of him. It has made adequate intake of food and nutrition difficult. The tumor has pushed all of his teeth to one side of his gum, where they pile on top of one another like little shards of white plastic. The mass is clearly growing into his mouth, under his chin and upwards toward his eye. Much of it hangs off the left side of his chin like a ripe fruit. He will not eat or drink in public, as he must push tiny bits of food into the remaining opening to his throat. With no usable teeth, eating has become mechanically difficult. His breath is rancid since there appears to be no clear way to perform effective dental hygiene. Jackson has a common, non-malignant facial tumor that is routinely seen in the United States, but it is also routinely removed as soon as it is diagnosed. Generally that’s all there is to it. No further problems, no sequelae. In fact, one of the counselors in my office had the same condition as a child, had it removed with no recurrence. His only aftereffect is a scar on his neck. Jackson’s scars are deeper, since he had to stop going to school in the second grade, has lived separated from his peers taunted on the street. He is alone, orphaned and nearly illiterate.

   Why is this child still suffering and basically living as a recluse? His parents are dead. He stays with an aunt who has no education and who can only offer him a bit of shelter. A neighbor, Abir, is the only human being who has taken an interest in him. Abir took it upon himself to take Jackson to the oral maxillary clinic at Kenyatta. He had to work long and hard to afford the 300 shillings required to get him seen by a doctor. All they tell him is to go to a specific medical supply store and buy an implant for 32,500 shillings ($500). Abir will not make that much in a year. We take Jackson and Abir back to the clinic and, of course, pay another 300 shillings. The oral surgeon on call states that Jackson, though in tough shape, is not as critical as are other patients so he will be put on a waiting list and he will need to buy the implant that will connect to his remaining jawbone and give him a stable chin line. The hospital has no extra implants on hand. If he would like to wait, a second hand implant from a cadaver may become available, although it might take years. But, since he was recently seen thanks to Abir, the measurement for the implant is accurate and all we have to do is take the prescription to a surgical supply store downtown. We ask to see the director of the clinic who tells us the same thing. “After you buy the implant and screws, there will be no other costs whatever. We will take care of all his needs, pre and post surgery.” We asked if the size is correct and he assures us that it is. The $500 was to be my vacation and Machakos money. It made better sense to save Jackson’s life and we leave Kenyatta feeling light and happy, confident that Jackson is going to have a chance at a normal life after all.

    The day of the surgery comes and goes with the clinic’s director stating, “The implant size is wrong. Go get another in this size.” We were dismayed. The next date was also cancelled. “We have a conference today. No surgeon will be available.” The next date was marred by, “We need another $150 US to secure him a bed.” By this point, I was back in the US, feeling extorted long distance and hardly daring to imagine how the turn of events was impacting Jackson. I also felt guilt at having left my Leo colleagues to battle this without me. Two months later, at the time of this writing, we have contacted a lawyer and hope that we will be able to get him scheduled fairly quickly.

    UPDATE: At the time of this writing (January, 2008), we have heard that Jackson did have his surgery after Christmas and was recovering in the hospital. Helen, because of a donation given to her by a very dear benefactor who knows what it is like to be ill, was able to be hospitalized and given appropriate medication and food. She is much stronger now and is able to keep down her ARV's. Since the civil unrest in the aftermath of the elections, we have not been able to communicate with either of them.