Lonely Heirs of AIDS

Seventeen-year-old Simphiwe Mtshixa sleeps each night in his parents’ bed, under a maroon satin quilt embroidered with pink and white flowers. Above the bed, on an otherwise bare wall, is a small framed photograph of his mother and father on their wedding day. James, who died of AIDS in 1997, beams in his crisp black suit. Virginia, who lived four more years, wears a delicate rhinestone tiara and a strong smile.

Nearly two years ago, as his mother lay dying of AIDS, Simphiwe swallowed a pile of pills so he could die too. But he didn’t.

So, since his mother’s death in August 2001, Simphiwe and his 14-year-old sister, Celiwe, have lived by themselves in their parents’ home on a road lined with shacks.

In South Africa, where an estimated 5 million people are infected with HIV/AIDS and few have access to antiretroviral drugs, families such as the Mtshixas are increasingly common. “Child-headed household” has become an official population category. But no one knows how many such households there are, and no one is ever likely to know. Parentless children living on their own often stay hidden -- afraid, because of community prejudice, to seek help. Last year, the University of Cape Town’s Center for Actuarial Research estimated that South Africa has half a million AIDS orphans and said that, without radical changes, that number will nearly quadruple by 2015.

Simphiwe and Celiwe don’t have much besides their mother’s high school sports ribbons, their parents’ stereo and television, and a shiny set of cookware their mother bought but said was too nice to use. They agree.

Celiwe does the cleaning, and Simphiwe cooks -- in worn, dented pots on a hot plate.

“If he’s happy, he cooks really nice,” Celiwe said. “If he’s sad -- aaaay, aaaay -- he burns everything!”

Simphiwe, Celiwe said, is sad a lot. He is so skinny that he looks at least five years younger than he is. The children are often without food.

When Carol Dyantyi arrived at the home on a recent afternoon, she found the kitchen cupboards all but bare. On hand: a loaf of bread, two onions, a few scoops of meal, a can of juice, half a bottle of ketchup.

Dyantyi runs Ikageng Itireleng AIDS Ministry, a Soweto-based volunteer group that does its best to look out for the Mtshixas and more than 100 other AIDS orphans spread out across the vast township. The ministry finds out about the children at their parents’ funerals or when its members are asked to come help a family in which an adult is dying.

The group pays the orphaned children’s electricity and telephone bills, gives them money to get to and from school, brings them donated clothes and tries to keep them fed. But it isn’t easy.

Dyantyi has many children to visit, she doesn’t have a car, and sometimes it takes a while for her to show up.

On this afternoon, she found the children’s aunt doing their laundry in the bathtub. The aunt lives in a nearby shack and tries to help out. But she is very poor, she often has to share the children’s food, and -- because she has AIDS -- she and the children know that the help she offers is only temporary.

Dyantyi, who lives miles away, and this one increasingly gaunt aunt are the only positive adult presence in the children’s lives.

If it takes a village to raise a child, the village is frequently absent or hostile here, Dyantyi says.

Relatives disappear after funerals or show up only to take over family homes and handouts meant for children. Neighbors pretend not to notice that no adults are living next door.

So many people in South Africa live in poverty, and everyone is scrambling to survive, Dyantyi says. It has become routine, she says, for large, hungry crowds to show up at township funerals, not to mourn the latest AIDS casualty but to eat the food laid out by the mourners.

“It is very rare, very rare when you see a neighborhood taking care of its own,” said this 43-year-old, perpetually exhausted caregiver.

Her crew of 15 volunteers can do only so much with a small cache of donated food and clothing and a monthly budget, from their church, of less than $1,000. Recently, someone donated a house for an orphanage. But it’s out in the middle of nowhere and needs major renovation and a staff. There’s no money for either.

Dyantyi finds businesses to pay for the orphans’ school uniforms and fees. She tries to keep the children in school. She tries to keep food in their bellies. Most of all, she tries to let them know they’re not alone.

Across South Africa, it is frequently only volunteers such as Dyantyi who keep these children going. Although the government offers bare-bones assistance, it does so only for youngsters who can produce documents such as birth certificates. If they have no papers, and most don’t, they get nothing.

At times, tears stream down Dyantyi’s cheeks and her soft voice cracks as she admits that her work takes its toll.

She said she often has to teach orphaned little ones how to wash themselves. She described a recent late-night call from a panicked girl whose mother died too soon to tell her that one day she would bleed and it would be her period, not the end of the world. She said she wishes she could find adults to care for all the children. She knows she can’t.

Dyantyi, who has five children of her own, has taken in another -- a 15-year-old boy who told her he couldn’t handle being the parent to his seven younger brothers and sisters.

She managed to convince a relative of the children to take in the seven siblings.

A few weeks ago, she also found a home for a family of five, ages 3 to 17, who recently had become not just parentless but homeless. Dyantyi convinced her boyfriend to make room for them in his house.

It was a typical case, Dyantyi said one recent morning as she stopped in to visit. While she told their story, the children jostled one another and squirmed, each trying to squeeze as close to her as possible on her boyfriend’s small couch.

When their mother died in October, the children thought their grandmother would care for them. Instead, she locked them out of the family home, rented it to a stranger and disappeared.

“My aunt told her that because our mother died of AIDS, we must suffer, we must not go to school. So my grandmother, she left and she said she was never coming back. I don’t know why,” said Sabela, the eldest. She spoke softly, in a monotone, her eyes glazed.

“It is only Carol who helps us now,” Sabela said.

Like Simphiwe, Dyantyi explained, Sabela recently attempted suicide. She was hospitalized for weeks after swallowing 66 pain pills.

Suicide attempts by these children are common, Dyantyi says. The children frequently are the sole caregivers for their dying parents. They clean up diarrhea and vomit. They are terrified.

“They are orphans long before their parents die. They are little children, and they are parents to their parents,” Dyantyi said.

Often, the children learn only after their parents’ deaths that AIDS was the cause. When others find out, the children are taunted. Sometimes even their schoolteachers, out of fear of the disease, don’t want to go near them.

Dyantyi tells the story of one 17-year-old orphan. The principal and her teachers kept telling the other teenagers to stay away from her after her mother died in July.

The girl, Sanelisiwe Dlamini, soon disappeared from the little beige house where she lived with six of her siblings and four of her older sisters’ small children.

She ended up working as a prostitute in Hillbrow, a rough section of downtown Johannesburg. Dyantyi believes that the girl, who recently returned home, may now be HIV-positive.

Misery is piled upon misery in the crowded Dlamini home, where in one bedroom six children share a narrow mattress. Three girls share a single pair of shoes. The children’s hand-me-down clothes are tinged with grime and don’t quite fit.

Three of the oldest Dlamini children live elsewhere. They try to send money home when they can, but that isn’t often.

Thoko Dlamini, 28, recently arrived with her own three children to look after her brothers and sisters. One of her brothers, 8-year-old Brian, has AIDS and is in and out of the hospital. Thoko, whose skin is mottled, looks unwell.

Relatives live in town, but they don’t visit. It’s probably better that way, Thoko says, since one uncle has sexually abused her sisters.

“It is a little bit hard,” Thoko said. Her eyes welled up. Her chin trembled. But she didn’t cry.She said she is scared to ask her neighbors for so much as a cup of milk because they are already unfriendly and would probably be more so if they learned about the family’s AIDS history.

“If we don’t have anything to eat, and if Carol is not at home, then we just sleep,” she said. “In this neighborhood, it is each man for himself.”

Thoko said she believes that Dyantyi’s visits are the only reason Sanelisiwe hasn’t run away again.

“She’s starting to like the atmosphere with Carol coming. Sometimes, Carol takes the children on picnics,” Thoko said.

Such small treats bring immense joy, Dyantyi says. The children expect so little of the world.

“I wonder what is scaring people away from our kids. It is not the child who is responsible. It has nothing to do with the child,” Dyantyi said as she left the Dlamini house to fetch the children a badly needed box of food.

“It’s as if the whole country is in denial about what’s happening here. And if it’s bad now, just wait. Wait and see what these children become if no one cares for them.”