Treating little people with big problems at Gertrude's

Gertrude's Garden Children's Hospital, in the plush Nairobi suburb of Muthaiga, is the Kenyan capital's only facility dedicated to paediatrics and, until recently, the only one of its kind in East Africa, a region with hundreds of thousands of HIV-positive children. Built in 1947, Gertrude's original structure was a modest cottage, now barely visible amid the modern laboratories, examination rooms and wards. Today, the Gertrude's Children's Hospital's non-profit trust, supported by the United Nations Children's Fund (Unicef) and other donors, treats 130 HIV-positive children, aged between two and 14. The Comprehensive Care unit performs HIV tests, offers counselling to parents and children and, since July 2005, has been providing free antiretroviral (ARV) therapy, thanks to the Global Fund to fight AIDS, Malaria and Tuberculosis. One of the toughest challenges the staff face is telling children they are HIV positive. "As they grow older, children get concerned and ask, 'Why am I taking medication? Why am I not going to school? Why can't I play with the other kids, why am I always in hospital?'" said chief paediatrician Dr Renson Mukhwana. Sporting a bright pink and yellow name tag that reads, 'Hello, I'm your chief paediatrician', Mukhwana said the hospital advised parents to make their children aware of their status as early as possible so the child could become an active part of their treatment. However, Sister Margaret, who is in charge of Gertrude's HIV/AIDS programme, said many parents resisted the idea of telling their children they are infected. "In our society, most of the time it is the parents who don't want the status of their child to be disclosed," she said. "Most of the time, even the teachers will not know." The stigma children could face if they disclosed their status also explains the parents' reluctance to inform them: their family members or peers at school might reject them. "The other kids will avoid them in play. Ideally, teachers should play the role of guardians, and support the child, but I don't know of any school where HIV-positive pupils openly disclose their status," Mukhwana commented. Sister Margaret said children were bound to discover their status at some point. "There are more and more HIV-oriented programmes on television, so the child could learn about his illness by watching TV, by recognising the medicine displayed." Many of Gertrude's HIV-positive young patients are brought to the hospital by their parents, but about one-third are orphans, referred by public social services. Most cases of HIV derive from prenatal infection, some from sexual abuse or infected blood transfusion. One case was the result of traditional male circumcision with non-sterile equipment. According to Mukhwana, "when told they are HIV positive, most children go through some sort of depression", and the parents or caretakers' reaction also needed to be monitored. "Some parents react very angrily and blame the children; mistreat them. They refuse to touch them; they feed them apart from the rest of the family," he said. Sister Margaret said the patient's awareness of his or her status was pivotal to ensuring proper adherence to treatment. "We often need to counsel the parents in order to get them to accept telling their child. It is essential for the children to understand why they have to take medicine," she emphasised. Some 70 percent of Gertrude's patients are on ARVs, which have to be taken with strict regularity. The hospital provides the parents with a monthly supply of medication, which can be a problem when the parents are away, as those caring for the child may not administer it properly. Another problem is that patients under the age of five cannot cope with ARVs in tablet form and have to take syrup instead, but the syrup costs five times as much as the standard combination tablets. Robert Nyarango, chief pharmacist at Gertrude's, said this was less than satisfactory: "The syrups are not palatable - the children spit it [out] or vomit it," he said. Despite the special needs of treating HIV-positive children, the counsellors are satisfied with their prime indicator: 93 percent of those who started taking ARVs at Gertrude's Children Hospital have consistently remained on treatment.