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Children of Lesotho orphaned by AIDS

by Agnes Chan

MASERU, Lesotho — If I had heard a sadder song, I could not remember.

Mahopolang was lying on her side in her mother’s house in a small village up in the mountains of Lesotho. A 31-year-old mother, she had left her 13-year-old daughter in Maseru, the capital of Lesotho, and had come back to Bobatsi, her hometown, to die. She was singing a song for me, “Jesus looks after even the dying, the sick and sinners.”

The women who had gathered to tend to her needs joined her in chorus. I held her hand tight, but I just could not find the words to comfort her. Over the past few years, stories like Mahopolang’s have become more common.

Lesotho is a small kingdom (about 30,000 square kilometers) landlocked within South Africa. With 36 percent of the population living on less than one U.S. dollar per day, 49 percent of the able young men leave Lesotho to work in the mines of South Africa. Some workers, however, brought home not only money, but HIV. They infected their lovers, their wives; mothers in turn then gave the sickness to their children.

Mahopolang’s husband worked in South Africa. She suddenly fell ill three months ago. She vomited everything she ate and constant diarrhea made her weak. She lost weight and all her strength. She went to a clinic and tested positive for HIV. The deterioration of her health was so fast she could no longer look after herself. It left her no choice but to leave her child in the city and return home to die in the care of her family.

We held on to each other for a long time. We both knew the inevitable, but still Mahopolang could laugh and have a good time. I cracked jokes, sang songs and pretended that there was nothing terminal about her condition. When she smiled, I wished the moment could last forever. When I stood to leave, she said, “I love you,” and, for a moment, my heart stopped. A surge of emotion in me was so strong I could hardly utter a word, but I managed to reply “I love you too.” And I truly meant it.

According to a United Nations Children’s Fund (UNICEF) estimate, one of four people living in Lesotho has HIV/AIDS. The population has shrunk from 2.2 million in 1990 to 1.8 million today and life expectancy has dropped from 60 years to 35 years. With so many adults dying daily, the fate of children left behind is becoming a major concern. There are 18,000 orphans in Lesotho of which 10,000 were orphaned by AIDS. These children have been abandoned, thrown out of villages, or left in facilities with no where else to go. Every day, 10 children in Lesotho die of AIDS, and at least one child contracts HIV.

From Maseru, we prepared to go to Mokhotlong, one of the farthest provinces from the capital and where villages were still greatly in need of help. It took us more than seven hours to reach the village of Bobatsi. The air there was thin and cold, and the scenery outstanding: a beautiful landscape carved into the top of mountains. Rolling fields of wheat awaiting harvest shone in the sun and small round huts huddled together formed communities.

Once in a while we caught sight of shepherd boys running after sheep and cows, their capes flapping in the wind, or women and girls wrapped in traditional blankets trekking across the hillsides with water-buckets on their heads. It was an image so beautiful that many of us almost forgot why we were here and the problems we were to face.

Bobatsi’s village chief, an elegant lady dressed in a blue blanket and black heels, immediately told us of her concerns. “My greatest worry is the growing number of orphans in this village. They were left alone in houses. Some time ago, several children were being taken away at night and then abandoned. I fear for their safety,” she said as she gestured to the children who had gathered to welcome us. “Look,” she continued “these are all orphans.”

Surprised by the number of children she had pointed out, I asked if their parents had all died of AIDS. “I know only that they died of an epidemic. I am not going to mention the name,” she replied. The chief did not once mention “AIDS,” as if the word itself was as deadly as the disease. Then, quite suddenly she said sadly “actually, my son came back to see me from South Africa, and he died two weeks ago.”

Right beneath where we stood, bodies had been buried; in fact the whole slope was now a full burial ground and the new cemetery created by the village to compensate had also reached its limit. So many people were dying that once popular lavish funerals were no longer the norm.

Retsilisitsoe is a member of Bobatsi village, but lives way up in the hills. After a 30-minute walk from the village center she pointed to a small hut on the top of a hill. She nodded when asked if that was her house. She seldom spoke. Retsilisitsoe and her brother, Rethabile, lost their parents to AIDS three years ago. Now, Retsilisitsoe, 13, and Rethabile, 11, live by themselves. The rain had made the roads almost impossible to walk on and the thin air made me breathless, but Retsilisitsoe and her brother moved fast. Retsilisitsoe ran ahead to open the door to her hut. I looked in and found the room spotlessly clean. The dirt floor had been brushed smooth. A small rectangular can with holes in the middle turned out to be a stove. Lined up against the wall were cups, plates and bowls. I counted them. There was exactly four of each, painstakingly stacked in order.

“Is that how your mother tidied up?” I asked Retsilisitsoe. She nodded again.

For the past three years Retsilisitsoe has been taking care of her brother. She collects food and fuel, she cleans, cooks, washes, and in the winter she tries to keep herself and her brother warm. In a short space of time she has had to grow up fast. I watched her now go about her chores. She gathered cow dung as fuel, and boiled some water. She used the water to clean the next room where their parents had lived.

“Nobody sleeps here anymore?” I asked and she nodded. Still, she wiped the floor, the table and the chairs, almost as if expecting her parents to return at any time.

She then went out to gather leaves. It took her some time, and when she returned it was already getting dark. She washed the leaves, chopped them and cooked them over the stove in a pot borrowed from a neighbor. The two children ate the leaves with papa, a paste made from maize. “My dad was a painter who painted windows. My mom was very clean and she sang in the chorus in church,” Retsilisitsoe said when she finally talked about her parents. Although it took her more than two hours to prepare, the children finished dinner in about 10 minutes.

“We are going to sleep at a neighbor’s house,” she then said expressing some concern. Retsilisitsoe’s night fears, however, are not those of any ordinary child. It was not ghosts or animals she was afraid of. She looked out of the window and said, “Men. They come at night. We are afraid, so we sleep on the floor of our neighbors.”

Retsilisitsoe and Rethabile’s story is just one in thousands of orphan cases. Some orphans end up living with their grandparents, some in facilities and others simply disappear.

A boy from the village, Tsuonero, saw his mother being thrown out of their village when his father died of AIDS. His mother went to his grandmother’s place where soon after she too died. Tsuonero has lived with his grandmother ever since.

“I have four orphans in the house, one each from two of my daughters who died, and two from young couples who died in the village,” said Tsuonero’s grandmother Mamorupi. At 60, Mamorupi has seen many people less than half of her age die of AIDS.

“Do a lot of orphans live with their grandparents?” I asked her. She shook her head: “No, most of them live alone.”

Some of the luckier children end up in special orphanages. Maseru Children’s Village is a home to 25 children. Three of them are HIV positive. “Many of them have no place to go. Their parents died, and even if they are not infected, their relatives refuse to take them into their homes,” said Lawrence Masopha, the director of the facility.

Touching Tiny Lives in Mokhotlong is a home for newborns to 5-year-olds. “HIV-positive children need continuous care, especially when they are on Antiretroviral treatment (ART). Children rarely live to 5 years old if they do not get treatment,” Nthabeleng Lephoto, the managing director, told us. She showed me the photos of children they had lost since last year. For the other orphans, “we have a large outreach program where we try to put the children back in to the communities. But sometimes they get abused and we have to take them back.”

Itook a photograph of Materis (not her real name) and her two children, 15 and 8 years old, as they sat outside their house enjoying the sun. Materis was happy and amused because I had just finished a drawing of her husband, whom I had not met but whom she had described in detail. The photograph I took was of what appeared to be a perfectly happy family. But beneath that surface happiness lay a different story. Last year, Materis’ husband died while working in a mine in South Africa, the suspected cause of death was AIDS.

When Materis went to her nearest clinic with her 8-year-old daughter, they were both diagnosed as HIV positive. She has kept her situation a secret and been in denial since.

“Please do not let the villagers know that I have the virus,” she pleaded. “They will discriminate against us. A while ago, someone was killed when they were discovered to have AIDS.”

Her 15-year-old son had blisters on his mouth and the back of his ears were swollen, but still he had not been taken to a clinic for a test. “The clinic is so far away that even if we started at seven in the morning, we would not reach it until after noon. Last time, when we walked back, we had to sleep on the road for one night,” said Materis. With her health deteriorating fast, it had become impossible for her to make the trip. She refused to talk about her sickness, even though it was obvious she needed treatment.

The work of international nonprofit organizations and UNICEF has led to Lesotho now being able to provide ART at $140 per year for adults and $220 per year for children. In order to get treatment, patients have to be tested for the virus and have their CT4 (viral load) levels checked. Anyone with a CT4 levels below 200 would be eligible for treatment. To receive the ART treatment patients then have to go to one of the seven major hospitals in the country.

For villagers living high in the mountains, as Materis does, a trip to the hospital is extremely difficult. However, another obstacle also faces AIDS awareness groups: denial and ignorance of the disease. Materis, like those who she feared — those prejudiced against AIDS sufferers — had not been educated well enough about the disease. She wanted to forget about AIDS and pretend that everything was fine. Even after we offered to take her to the hospital so all three of her family could get a thorough check up, she declined.

Denial, misinformation and discrimination have helped the virus spread in Lesotho. There were few young men in the village, but several older men talked to us about the use of condoms: “People have said that there are worms in condoms,” “Some people said if you use condoms, you will get AIDS.”

The origins of such rumors are unknown, but they give men an excuse not to use protection. Some people even believed that having sexual intercourse with a virgin would cure an AIDS sufferer, which led to the rapes of very young children and further spreading of the disease. If such rumors and superstitions are quashed, HIV transmission can be limited. An exchange of body fluids is needed to transmit the disease, for example through sexual intercourse, giving birth, blood transfusions, sharing needles etc. Simple education on preventative measures can help.

Maseano, 21, was 9-months pregnant when we saw her. After receiving counseling from the nurse at the Prevention of Mother to Child Transmission of HIV (PMTCT) center of Mokhotlong Hospital, she had decided to take the HIV/AIDS test. We stared at the slip of paper with her blood on it. If two stripes were to appear, that would mean that she was HIV positive. If one stripe were to appear, then she would be negative. No one dared to breathe. She let us stay with her during the wait. Those five minutes felt like a lifetime. Finally the nurse’s confidently smooth voice said “I think she is negative.”

We looked at the paper and saw a faint single stripe. The relief was almost palpable as everyone congratulated Maseano. Maseano was in fact very lucky: In Lesotho one in three pregnant women who take the test, test positive.

Thandi, who gave birth to her first child three days before we visited her, was not so lucky. She had tested HIV positive. We met her at Good Shepherd home for teenage mothers, a facility supported by UNICEF. Despite her situation, she told me “I have no worries. My dream is to work and build a house so I can live with my child.” She knew who the father is and loved him, but she did not want to marry him.

“I am receiving treatment and I gave birth to my child through C-section. I am not breast-feeding,” she told me. Thandi had taken all possible preventive measures to keep the virus from her child. Without such preventive measures, there is a 30 percent chance of a baby contracting the virus from the mother. With preventive measures, the probability drops to 10 percent. Thandi may have been HIV positive, but she was still radiant, full of hope and genuinely happy to have become a mother.

‘A IDS is no longer a life-threatening decease. We cannot cure it, but we can control it. We are treating it like a chronic disease where the patient needs to take medicine for life. But the patient can function normally as long as they stick to the treatment,” said Doctor Oo, the only physician in Mokhotlong Hospital. He showed us the drugs he was prescribing and introduced us to patients receiving treatment. “This program started in 2005. In the whole of Lesotho, we have 10,000 adults and 200 children under treatment,” he said. Although those numbers are impressive, when compared to number of the people infected in Lesotho, there is still an obvious need for more help.

UNICEF, other nongovernment organizations and international relief groups work hard to make treatment available for several AIDS-stricken African countries. UNICEF works with governments to train personnel for hospitals and clinics to administer tests, treatments and to counsel. They also raise the funds to support such an expensive operation, and they support facilities that look after children with HIV and children orphaned by AIDS. Supplying food and medicine is also a crucial part of their activities.

By using games, music and skits, UNICEF also teaches teenagers to understand the real nature of AIDS and helps them overcome taboos by talking openly about the subject. Support groups are being set up in villages to help care for the sick and educate the people about the disease. Even in Bobatsi village, there is a 14-member support group. In St. James, a nearby school, teenagers use music and skits to illustrate the problems associated with AIDS. Their aim is to go from village to village to spread the message.

There are 15 million children orphaned by AIDS in the world. Every minute a child dies of AIDS. Every 15 seconds, a child will be infected with HIV. UNICEF has started a 5-year campaign to fight AIDS — Unite for children, Unite against AIDS. Now that we know proper information and treatment can be used to fight the disease, relief work is producing results.

Until last year, no one in Lesotho with HIV/AIDS could do anything but wait to die. It is still hard to get treatment, but the minimal basic structure for help is now available. Long-term commitment, in particular financial commitment, is the key to further success because once someone starts AIDS treatment, it is for life. We need to commit ourselves to helping the people of Lesotho help themselves.