Two weeks ago, Grace seemed like any other nine year old girl in northeastern Uganda’s Amuria District. She was attending school and helping her mother around the house. Suddenly she was unable to hold down food. The medicine her mother bought at the local clinic was of no help. Now Grace hasn’t eaten in over two weeks and weighs just 13 kilos (28 pounds). Sores on her lips and mouth make any ingestion of food far too painful to bear.
Grace’s mother, Sarah Kembi (27), found out that her daughter was HIV positive only two years ago. Since that time Grace has been taking Septrin, a stabilizer drug that, while not an ARV, still reduces the chances of opportunistic infections. Sarah’s husband, Grace’s father, succumbed to AIDS around the same time Mrs. Kembi figured she had better get her daughter tested. Though Grace was likely healthy enough to forgo ARV treatment two years ago, her system is now too weak to begin them.
Sarah has brought her daughter to Amuria Health Center IV, the largest in the district. At first she identifies Grace as her niece, too ashamed to confess her as her own in her present state, and too afraid of fellow patients thinking that she herself shares the same disease. But the health center here is not capable of handling such cases as dire as Grace’s. They connect her to a hydrating drip and wait for her mother to scrounge up enough money to fuel the ambulance and pay its driver or hire a taxi to the Regional Hospital in Soroti, 50km away. “What we’re doing here is just minimal life support. The longer we delay to get her on ARVs, the greater her chances of developing some very serious opportunistic infections. She’s at risk of dying,” says Dr. Raymond Malinga.
Today Sarah’s results come back from the lab. She took the test just yesterday. They confirm what I’m sure she’s known all along. Sarah, too, is HIV positive, but until this time has put off knowing for certain. “We have a problem with denial here,” says Dr. Malinga, and that denial is likely why Grace is in the state she is now. “At the time (of testing) there was no reason to go on ARVs. The child was healthy.” However, from the test two years ago until now, there was likely never any periodic testing or even follow up by her mother.
Besides her newly confirmed HIV positive status, Sarah Kimbe (above) is an outsider here in Amuria, land of the Iteso tribe. She comes from neighboring Democratic Republic of Congo, where she met her husband, a Ugandan soldier from Amuria , whose job was to chase after Joseph Kony and his Lord’s Resistance Army. Sarah doesn’t speak the local language but communicates instead with Swahili, which in Amuria is usually only used in trade or transportation.
With no land of her own, she moves from plot to plot in the village as a hired farm hand, earning less than fifty cents for every field she tills. Though she longs to return to her family in neighboring DR Congo, Sarah thinks her situation may be better here in Uganda, due to its comparatively superior health care system. She hasn’t had to pay for the Septrin Grace has been taking for the past two years. Although the health center has been out of Grace’s needed drips and Sarah has had to purchase them from the local pharmacy, the nursing and bed Grace has received from the center have been free of charge. “In Congo you have to pay for everything,” she complains.
Thankfully, Sarah doesn’t have to pay to get to Soroti Regional Hospital either. After a week of Grace languishing in the Amuria’s health center, a compassionate passer-by takes note of her serious condition and springs for the $2 journey for her and her mother. They pile in to a taxi with four other passengers and head out of town.
Throughout my time with her, with the exception of a couple brief crying jags, Sarah has remained remarkably stoic. Yet it’s clear that she’s hopeful, and perhaps even certain of her daughter’s recovery: “When she’s stronger I want to return to my home in Congo. I want Grace to be able to go to school and to study.” Above, Sarah Kembi removes washing from the line outside Amuria Health Center.
It takes just an hour to reach the hospital. Grace weighs in at the aforementioned 13 kilos, more to the surprise of the other patients than to the doctors and nurses. Unfortunately her case seems only slightly less than routine.
Grace’s referral paper gets her through the queue at the hospital more quickly than the other patients. She’s first sent to pediatrics, after which she’s sent to a special feeding center, a critical care unit for malnourished children. Dr. Okwairwoth Justine, the in-charge on-duty, offers cautious optimism: “If it was just malnutrition, I’d say she’d definitely recover. Right now she’s dealing with malnutrition and severe infections. She’s running a fever. But even now she can sit up straight. She can improve. I have hope.”
Once Grace is settled into her new bed, she falls to sleep. Her mother runs out and returns 15 minutes later with a black plastic bag that she cradles with one arm so as to keep it from bursting. Out of it she draws a thermos of warm milk for her daughter. She places the bag with its remaining contents on the floor underneath the bed. The contents turn over and clang on the floor: two sealed bottles of beer. She glances at me in embarrassment. I pretend not to notice. “How could she at a time like this?” I think to myself. However, as I make my way out of the hospital I begin to sympathize. The woman must be a frantic mix of gloom and fear on the inside. Once Grace makes it, she knows she has herself yet to deal with. I may go and have a drink myself.