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XDR-TB cuts short young lives in South Africa.
JOHANNESBURG — As I enter the small schoolyard a little boy in a blue paper crown runs up and flashes me a welcoming smile.
Fanyana (not his real name) is “the brand ambassador” for the school, and this is his birthday party with cake, chips and dancing.
“Shall we mess your face?” his principal asks him. “Yes,” he says and she smears cake all over his face. While the crowd sings happy birthday, he smiles and sneaks licks of icing off his cheeks. He is seven years old, but this is likely the last birthday he’ll ever have. He is not expected to live more than a few months.
Along with his classmates, Fanyana is quarantined at Sizwe Hospital. His mother infected him with HIV at his birth, and before she died, she gave him the XDR-TB that killed her. None of the available TB drugs are helping him and doctors recently found a hole in his lung the size of a tennis ball.
This little boy and his classmates are isolated in a massive hospital, surrounded by razor wire. They are the victims of an epidemic that has its roots in poverty, the AIDS crisis and bad disease management. The extent of South Africa’s drug-resistant TB problem is difficult to measure, and there are few good estimates for the number of children who are infected like Fanyana.
The small school is a rarity among South Africa’s isolation hospitals, one of only two in the country. For the 15 children who attend this school, it is their one respite from what would otherwise be a prison sentence. Stimulation is hard to come by at Sizwe, which is why most patients spend their days wandering the grounds aimlessly.
“If there was no school, can you imagine sitting and staring at the blank walls all the time?” said the principal, Priya Singh. “For them, the ward is like a prison.”
Parked in a row outside the school are seven tricycles, as if a pack of pint-sized commuters just pedaled in. A hand-lettered sign by the entrance reads “2 visitors at a time. Wear a mask.” Inside, the school is a learning oasis, despite a lack of funding and other constraints. The school is funded by the government’s department of education and whatever private funding Singh can raise.
The students are taught the standard South African curriculum, or as much as possible given their frequent absences due to illness. They are also taught to take responsibility for their TB medications, an important lesson in a country in which 10 percent of the TB patients simply stop taking their medicine.
The students follow a firm routine, with set rules. Fanyana arrived in 2006 speaking no English. Now he lectures the nurses in the children’s ward. “You must only speak English with me, or Ma’am Singh will shout,” he says. “When you come to our school, you must wipe your feet outside. And you must brush your teeth. And you have to have a bath. You must put your uniform in. And when we go in, we do prayer. And we do lots of jobs.”
They also talk about death. “We’re very honest,” says Singh. They explain it as God needing someone to come to heaven to do a job for him — the dusting, say, or to cook God’s breakfast.
"Their little bodies are trapped in so much pain at the moment, so much agony,” she says. When they hear that heaven is a place where there won’t be any pain, the kids get excited and say: “When can we go? That’s a place I want to be.”
Speaking with Fanyana on a bench beside the fenced-in playground, he tells me what he learns in school. “English,” he says and proceeds to give me a lesson. “When you get in, you say ‘good morning’,” he tells me. “And you say ‘thank you’ if he gives you something. You say ‘thank you’ and he say ‘you welcome’.”
As the ambassador for the school, he has big plans for the upcoming Christmas party. “We must paint. All things must be nice,” he says earnestly. “All the grass must go down; the jungle gym we’re going to leave there. We’re going to be busy.”
He looked at me then and shook his head. “We’re never going to finish.”
Part I of this series explains the challenge of treating patients in rural areas.
Part III of this series examines the debate among public health officials about isolating patients.