Sindi's Story: Coming Face-to-Face with the Human Tragedy of AIDS

SINDI* was orphaned when she was just four years of age, after her mother died of AIDS. That was seven years ago. Like so many other AIDS orphans in Southern Africa, Sindi and her five siblings found a new home with their grandmother (or "Gogo"). They moved into Gogo's poorly maintained mud and stick homestead, on the hillside overlooking the SOS Children's Village. Although Gogo had retired some years ago, she found work as an office cleaner, in an effort to support her new dependants. Sindi - who had not only been orphaned, but had also been infected with HIV herself through mother-to-child transmission - received additional support from the neighbouring SOS Children's Village. She got a scholarship to attend the SOS Kindergarten and School, as well as a daily lunch box. Although she was often unable to attend school, because she was sick, Sindi always came in the top five of her class - a bright, curious little girl. "I think I will be in heaven before you, don't you?" When Sindi suffered from tuberculosis for the first time due to a weak immune system, she spent many weeks in hospital. It was then that she developed a particularly close bond with one of her older sisters, Siphiwe. Since then, whenever Sindi was sick or in hospital, Siphiwe could be found by her side. They sang together and Siphiwe read to her. Once she told her about the Harry Potter film, and Sindi was wondering if she would ever see it. Siphiwe often faced difficult questions from her little sister such as "will I ever be normal like other kids and be able to play?" and "I think I will be in heaven before you, don't you?" It was on a Wednesday when they carried Sindi into the car for the last time. Wrapped in blankets, she had lapsed into unconsciousness. Her ten-year old frame was as light as a feather, thrush filling her open mouth. With her were Gogo and Ruth, an HIV/AIDS nurse counsellor. When they arrived at the government hospital, Ruth took her straight to the children's ward with Gogo, while another relative went to get the admission ticket. The ward was full and busy. The sister showed them into the babies' ward. A baby was moved from a child-sized cot to a baby one so that they could put Sindi down. The sister administered oxygen. Sindi was lucky, as although it was six o'clock in the evening the doctor was on the ward. He examined her and advised the nurse to give further treatment. Ruth said her goodbyes to Sindi and left Gogo to stay the night. A few hours later Sindi died. The family was pleased she had died in hospital where "everything possible had been done for her". Many said that it had been "time" for Sindi and that "God knew best". Siphiwe said she felt there would never have been a time for Sindi to die. She did not want to accept the loss of her friend. A quarter of adults are HIV-infected Sindi is not unique and similar stories can be heard of many other children across the region of Southern Africa. In the Kingdom of Swaziland where Sindi was born and lived her short life, the HIV/AIDS statistics are horrific. Here, HIV prevalence rates are amongst the highest in the world, with one-in-four adults (aged 15-49 years) being HIV-infected and the expectation that at least a third of today's 15 year olds will also become infected and die of AIDS. Moreover, with one-in-three pregnant women HIV-infected, it can be expected that one-in-ten of all babies born in the country will also be infected. The death of parents is also creating an orphan crisis of unprecedented proportions. Already, one-in-six children (under 15 years of age) have lost one or both parents and it is estimated that by 2010 this figure will have risen to one-in-three children. Traditionally, most orphans have been accommodated within the extended family network, usually by uncles and aunts, or if unavailable then by grandparents. However, the scale of the current orphan crisis is stretching this traditional social safety net to breaking point. The capacity of the extended family to provide care and support for these children is being undermined by the overwhelming number of orphans, the diminishing number of potential care-givers, the urbanisation of populations and the move towards nuclear family structures, the erosion of traditional values underpinning extended family networks, widespread unemployment, and poverty. Grandparents may be seen as the care-givers of last resort, and the increasing extent to which they are being called upon to act as carers indicates the scale of the problem. These statistics are by no means unusual in Southern Africa, with similar figures in Botswana, Lesotho, Namibia, South Africa, Zambia and Zimbabwe. When faced with these horrendous statistics, it is easy to lose sight of the real human tragedy of HIV/AIDS. A tragedy that is played out day after day in families such as Sindi's throughout the region. Nevertheless, Sindi's family has been fortunate, in that it is living in the vicinity of the SOS Children's Village in Mbabane. Not only was Sindi one of 130 children from the local community who benefit from educational scholarships provided through the SOS Kindergarten and Schools, but her surviving family members continue to receive support from SOS Children's Villages. The Family-Carer Programme Sindi's family is one of the Gogo-headed households now being supported by the Family-Carer Programme, a joint initiative between SOS Children's Villages and the Salvation Army. The programme is designed to strengthen the capacity of families to care for orphans and other HIV/AIDS-affected children, within the two "township' communities where the organisations are based. Children and families are being supported through weekly visits by community volunteers known as ?Family Carers', who receive modest incentive allowances from SOS Children's Villages. These carers have the task of ensuring that the families' basic physical needs are met, offering material support such as food, blankets, household fuel and school fees, as well as assisting with the establishment of income-generating projects. With each Family Carer offering support to four or five families, the programme is able to reach 350 children, at an average cost of just US dollar 25 per child per month. Community Committee Against HIV/AIDS While the Family-Carer Programme is new, the SOS Children's Village has been actively involved with the local community in combating the HIV/AIDS pandemic for some time. Two years ago, the "Sidvwashini Against HIV/AIDS Committee" was formed, made up of local community members and staff from the SOS Children's Village, SOS Kindergarten, Schools and National Office. Together they have resolved to make people aware of the dangers of HIV/AIDS and to provide some assistance to HIV/AIDS-affected families within the community. Basic Literacy Education Another programme that has grown out of that committee is the Basic Literacy Education Programme. This programme is designed to provide basic literacy education to children, some as old as their late-teens, who have not been able to attend school because their parents or guardians have not been able to pay the school fees. Often, these children are from child-headed or Gogo-headed households, or families with unemployed or very poorly paid parents. Some children have actually never been to school. Even if funds are made available for school fees, this makes it very difficult for such children to enter the normal school system. In response, the committee has approached the Sebenta Literacy Institute, which specialises in literacy training and adult learning, for assistance in training facilitators to teach children and adults. SOS Children's Villages has nominated the facilitators, will pay them modest incentive allowances, and provide teaching aids and learning materials. It is appropriate that Siphiwe, Sindi's sister, will be running this programme, given that she sacrificed many of her own education opportunities (she has local university entrance qualifications) in order to fulfil the wish of her dying mother that she look after Sindi. It is hoped that, through the Family Carer Programme, the Basic Literacy Programme and the Sidvwashini Against HIV/AIDS Committee, the SOS Children's Village Association of Swaziland will be able to make a real difference in the lives of children and families who have been most severely affected by the HIV/AIDS pandemic. This difference means enabling children and adults who are HIV-infected to live with dignity, and giving other HIV/AIDS-affected children and young people the hope of building a brighter future for themselves and their community. Authors: Enid Eyeington - Member, Sidvwashini Against HIV/AIDS Committee Dick Eyeington - National Director, SOS Children's Villages Association of Swaziland Douglas Reed - Community Development Advisor of SOS Children's Villages in Southern Africa  * Note: The names of the people in "Sindi's Story" have been changed to protect the confidentiality of those concerned.