Finding Hope in Kenya: Growing Up With HIV

Naina Dhingra is the Director of International Policy at Advocates for Youth and serves on the Developed Country NGO Board Delegation of the Global Fund.

The drive is one you don't forget: a terrible pot-holed road from town usually filled with bumper to bumper traffic. But the destination is well worth the price. Karen, a wealthy Nairobi suburb of mizungus (Swahili for "white people") is usually not a destination for those working in international development. Kangemi and Kibera, the slums of Nairobi, are more up our alley. But tucked away in Karen is an inspiring program called Nyumbani. Nyumbani, which means "home" in Swahili, is a home for HIV+ children who have been orphaned or abandoned.

Nyumbani was founded in 1992. At the time, the home was essentially a hospice for children dying of AIDS. There was little hope for long-term survival. As Nyumbani grew in size over the years, the staff refused to sit idly by and watch the children die. They broke up adult antiretroviral (ARV) drugs to give to the children based on new pediatric formula recommendations issued by WHO. They were accused of testing on children and using them as guinea pigs. But it was the only way they knew to give them a chance of survival. Miraculously, they saw a remarkable difference that convinced them to make a commitment to ensure that Nyumbani's small residents had access to life-saving ARVs.

Three years ago, I was a volunteer at Nyumbani and was constantly amazed by the commitment of the Kenyan staff to ensure that these children had as normal of a life as possible. There is a misinterpretation that Nyumbani is an orphanage, with Dickensian images coming to mind. But life at Nyumbani is far from the soup lines and harsh discipline of Oliver Twist. The children live in small cottages and have house "moms." These moms are Kenyan staff members who take care of them as a mother would her own children.

I returned to Nyumbani this past December and had to remind myself repeatedly that the children were indeed HIV+. I saw remarkable changes in some of them. Amal, a young Somali girl who had arrived three years ago, was talkative and outgoing. She had come to Nyumbani as a toddler barely able to walk; she had been tied to a bed by her grandmother for fear that the villagers would kill her due to the stigma of AIDS. Three years of love and compassion at Nyumbani had turned Amal into a child with a constant smile and friendly attitude.

Nyumbani had certainly come a long way since 1992. Most of the children came to Nyumbani as infants or toddlers. These children are now becoming teenagers. Living long, relatively healthy lives has now become a reality for the children with better access to pediatric and adult ARVs. The home, which has largely been funded through private contributions, is now receiving all its AIDS medications from the President's Emergency Plan for AIDS Relief (PEPFAR), which has dramatically freed up limited resources.

Nyumbani is unique because of its insistence on providing ARVs to children before ARVs were available for adults in Kenya. Nyumbani, which houses around 100 children, is a model for abandoned children. But it is not likely to be replicated in wide scale due to the trend in Kenya for children to stay with extended families as stigma reduces around AIDS.

The issues that Nyumbani faces now with its residents becoming teenagers is a case study for what the future holds for the many children receiving ARVs thanks to PEPFAR and other funding sources. A critical factor for donors, NGOs, and national governments will be recognizing the sexual and reproductive health needs of HIV+ youth as they mature into adolescence to keep themselves and their future partners healthy. Abstinence-until-marriage prevention strategies for HIV prevention could end up causing even more harm due to the fact the youth audience is already HIV infected, leading the young person to engage in risky behavior, as the most serious consequence (HIV infection) is already a reality.

When talking with the teenagers at Nyumbani, the first thing you realize is that they are just like any other teenagers. They have hopes, dreams, crushes, uncertainty about their bodies, and insecurities. They no longer can be treated exclusively as AIDS patients for pure survival. Recognizing this, Nyumbani just completed building a new set of cottages on the property that are known as the adolescent homes. Those who are older than fifteen will live in these houses, divided by sex, with a house mom or uncle. The purpose is to give them independence and to learn to take care of themselves by cooking their own meals.

But Nyumbani still faces challenges in dealing with the emotional needs of these teenagers. What will happen to them as they become young adults in their 20s? Nyumbani, like the international community that is working to give HIV+ children a better life, will need to be prepared to offer psychosocial support in the years ahead. This will help to ensure the HIV+ adults of tomorrow are educated about their own sexual and reproductive health and can have healthy relationships in the future.

Photo captions, from top: Faith being given her ARVs by her house mom; Adele and Faith playing with their new doll (a gift from British Airways crew members); Celebrating Purity's 17th birthday (she is one of the oldest teenagers at Nyumbani); the new adolescent homes being built.

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