The little girl with the stylish plaits gazes intently at the radio, as if she’s able to see the melodic guitar notes escaping the speaker.
There’s a mural of a tree and birds on the wall above her, in pastel shades of brown, green, yellow and violet. Another painting shows three African elephants lumbering toward a burnt-orange sunset.
Lerato Diphoko is a patient in the pediatric ward of the Diepkloof Hospice in Soweto, the huge township south of Johannesburg. This is not her real name. Her identity document says she’s 16, but she looks 12. She’s dressed in grey pajamas and white fluffy slippers.
As she battles to talk and to breathe, Lerato says she enjoys doing puzzles and reading. Her nurses say she’s no longer very active; she’s so sick she can hardly move.
Lerato has multidrug resistant tuberculosis – a type of TB that’s extremely difficult to treat. She also has HIV.
One of her caregivers says her life’s “on the edge,” because she received medication at a very late stage. But Lerato insists she “never” thinks about death. Instead, she’s focused on her future.
“I want to be a doctor, because I want to help others also,” she says.
Specialists in palliative care are treating Lerato with antiretroviral (ARV) medicines for HIV and the few drugs that her tuberculosis is not resistant to. It’s a complex regimen that may or may not work for her, according to her doctors.
South Africa has the largest public sector ARV program in the world, with the state giving the life-prolonging drugs to 2.7 million HIV-infected people. But the casualties of the globe’s biggest HIV pandemic continue. Several national and international medical studies estimate that more than 250,000 South Africans died of AIDS-related sicknesses in 2013.
Many of the fatalities are children.
‘I don’t want to die in the dark’
“Some of the children come here in very bad states, even from the hospitals,” says Duduzile Tlhapane, a nurse at Diepkloof Hospice. “They haven’t been cared for properly. They are full of sores; they are dirty. So we have to clean them and try to make their last days as comfortable as possible.”
Tlhapane says youngsters with terminal and life-threatening conditions arrive at the facility from all over South Africa, but most come from the impoverished townships and rural settlements around Johannesburg.
Sometimes the nurses visit their young patients in their homes.
“That’s usually very, very disturbing,” says the head of the hospice’s inpatient unit, Rachel Mabena. “They are sharing a house, being 15 or 20 (people) – in one room.”
Tlhapane adds, “They beg us to bring them here …”
Mabena says some patients have lived pain-stricken lives in such poverty that they tell her, “‘This is the best place I have ever been. I am at home now.’”
One told her, “Please don’t let me leave this place. I’ve got nothing to eat at home.”
Tlhapane says some children are in the “very last stages of life, close to death. But most of them, they don’t talk. They don’t want even to talk about it.”
She whispers that some patients are always silent, and their “only language” is tears. “For some the lights must always be on, right through the night, because they are so fearful of darkness. They say, ‘Sister, please don’t switch the light off. I will die in the dark.’”
A girl named Dineo …
Rian Venter has held many children in his arms as they died. “Brain tumors. Cancer,” he sighs. ”Muscular dystrophy. Heart problems … The list is long.”
Venter is a specialist palliative care nurse and manager of West Gauteng Hospice in the mining town of Krugersdorp, near Johannesburg. He says his child patients never leave him.
“Especially the little ones with severe deformities and life-threatening conditions, who were beautiful little human beings, and died. Some are joyful and happy until the day that they die. Every now and again you find yourself just remembering them, as though they’re still very much part of your world.
Venter’s colleague, Snowy Nkoana, says there’s one particular patient she cannot forget – a 15-year-old girl named Dineo. “She had TB and was HIV-positive,” says the nurse, whose words are punctuated with pauses as she fights back her tears.
“She got Ill not because she was careless… She was raped by people she knew. She was beautiful. Her mum always spoke so good about her.
“I was treating her. She was doing well. Then one afternoon I went to her place and she told me, ‘No, sisi (sister), I have a bad headache.’ After two days, the headache became worse and so we took her to the hospital.
“The last time the mother saw Dineo, the girl was in a lot of pain. Then she just turned her head to the wall and said, ‘Mummy, I am tired.’ The mother left and as she got home, the hospital called to say that Dineo has died. I was so hurt.”
That death has never stopped hurting Nkoana. The pain is evident in her weeping and her bitter outburst: “It was too soon for Dineo to go! I felt she was robbed of her life. If she was not raped that wouldn’t have happened to her.
“In this work, you become angry at people that you do not even know …”
Ten-year-old with cancer
At Wits Hospice in Houghton, Johannesburg, nurse Patience Machetu talks about a 10-year-old boy with cancer.
“He had lost weight, a lot of weight. And he was battling to eat. That case affected me greatly, because I have a child of my own. I was always on night shift with that child, and the mother was always there. She slept with that child.”
Machetu says to witness the mother “desperately” spending “every waking moment” with her dying son is the “hardest thing” she’s ever had to do.
“It was not easy to counsel her. It was not easy to talk to the child. He doesn’t understand why he’s in this condition. He doesn’t understand the words that we tell him. He doesn’t understand dying. He doesn’t understand anything.”
Machetu’s head drops and she rests her chin on her chest, trying to compose herself. Eventually, she continues. “You find yourself asking, ‘Why is this little boy dying when he hasn’t lived a life yet?’
“Eventually, he died. The mother was emotionally very distressed. But she had to bury her child. I wonder where she is now…”
Venter says treating children who are dying is never easy … But treating their parents is often harder.
“Nothing on earth compares to having to be the person to tell a parent: ‘Your child is going to die,’” he says.
“It doesn’t matter what the person’s training is, what their background is. I’ve seen professional medical people go to absolute pieces and not being able to cope with it; very religious people not being able to cope with it – blaming God, blaming everybody, blaming the world ... So fearful and so angry.”
Venter says parents have expectations for their children, but “suddenly their world is tumbling down” and they’re absolutely devastated at the realization that their child’s condition is terminal.
“Parents don’t sit and think, ‘I’m going to have 50 Christmases with my child’. But they have a subconscious expectation of that happening. Now, they know that the next Christmas, if they do get to it, might be the last one.
Venter says some parents never recover. Some turn to alcohol and drugs. Some commit suicide. Some live the rest of their lives in torment. Others find a kind of peace. Some lose religion, others find it.
Venter shrugs his shoulders, and mutters, “It’s all life …”
Children comfort parents
Inside his dark office at Wits Hospice, psychologist Cameron Hogg holds a fairy doll. “The girls love playing with this,” he says, smiling, in a flowing, electric blue kaftan.
Hogg argues that it’s a privilege to counsel children who are dying. He says their strength “infects” him.
“It’s the adults who melt; the children grow,” he insists. “I watch children who are minutes away from death comforting their parents. Children have a far stronger sense of the truth of what’s going on. They don’t intellectualize it, they just sense it.”
He believes his young patients make him a better person. “Children have such powerful souls and that power can rub off on you – if you let it. Most adults think of children as weak. But that’s so wrong. That’s something I realize every day of my life.”