Every day, nearly 1,800 children under the age of 15 are newly infected with HIV worldwide. And each day, 1,400 die of AIDS-related illnesses. Sub-Saharan Africa accounts for more than 85 percent of the world’s children living with HIV/AIDS. Raising HIV-positive children can be a daunting task, as they have special needs and conditions different from HIV-positive adults.
John is like many 10-year-old boys. His eyes twinkle with mischief as he makes funny faces at his baby sister, causing the infant to break out in peals of laughter while their mother Brenda looks on.
But in other ways, the challenges John face make him much older than his years. Every day of his life, he has to take medicine to stay alive. There are times when the HIV in his system ravages his small body, bringing him close to death.
Brenda (not her real name) is also HIV positive, as is her husband. She describes to VOA what it is like to raise an HIV-positive child.
“Sometimes, I tell you, he gets moody,” she said. “Sometimes you have to understand because sometimes it also happens to me. From you, he will learn that things have to go this way. It’s all up to us, the parents he’s looking up to. We really have to set an example and know that, it’s not anything, it’s just a way of life and we accept it and we carry on. He’s OK, he’s a strong boy, he eats well. I thank God and I say, it’s up to me, let me look for this food and make sure that he eats.”
John is one of an estimated 150,000 children in Kenya living with HIV/AIDS. The majority are infected either in the womb, during labor, or through breastfeeding.
Raising an HIV-positive child can be a daunting task. These children have special needs and conditions different from HIV-positive adults, and must be cared for accordingly.
Dr. Robert Nyarango is a pharmacist at Gertrude’s Garden Children’s Hospital in Nairobi, which has an HIV/AIDS program for children.
Dr. Nyarango says younger children who are unable to swallow pills take anti-retroviral drugs in the form of a syrup called Stocrin, which poses its own problems.
“One of the biggest challenges in treating HIV children is because most of them have to take syrups, and most of the syrups are not palatable, and for that reason, it really affects their adherence to the treatment,” he explained. “Some of them would spit out or vomit the syrups and this is a lifelong treatment, then it becomes quite a challenge to have the children cooperate in taking the ARVs.”
Dr. Nyarango says one alternative is to give young children tablets or pills, but caregivers would need to cut the adult-sized doses into half, a feat he says even nurses struggle with and can lead to over- or under-dosing.
Whether or not HIV-positive children adhere to their ARV regime depends a lot on the attitude of the child’s parents or caregivers.
Pediatrician Renson Mukhwana explains that some parents or caregivers can be irresponsible in administering the ARVs, especially if they do not understand the importance of drug adherence or if they do not want others to know that the child is HIV-positive.
“What we have observed is that those [HIV-positive children] who are in orphanages, they don’t miss [their medication], because somebody’s there to give,” he noted. “But these ones that have a caretaker, we have situations where one may miss a drug once or twice because he or she had gone on safari [traveling] and nobody else was there to give the drug. Even if we had persons within the household, these persons are not involved in the direct care and therefore the caretaker doesn’t give them instructions to give the medicine or doesn’t want them to know that this child is positive.”
The issue of disclosure is also a challenging matter. Parents struggle to decide whether or not to share with the child his or her HIV status, and who else, such as other family members or teachers, should know about the situation.
Counselor and senior nurse at Gertrude’s Garden Children’s Hospital, Lillian Onyango, explains why many parents chose not to tell their HIV-positive children that have HIV, and why she thinks that decision hurts the children.
“They [the parents] still blame themselves, this stigma of blaming themselves that the child will say it is me [the parent] who has given you [the child] this disease, so you’ll have to continue taking the drugs all through,” she said. “Sometimes they feel that the children will also go and tell other people, and if they tell other people their children will be stigmatized. Normally we tell them [the parents] as the children grow, they will learn to know these things, so it’s better if they know early and they will help their children also to take their medicine because the children will keep on asking them, ‘Why am I taking this medicine, Mummy, all the time and now I’m well?’”
Onyango says she typically tells children under 12 that they have an infection of the blood and need to take their medicine all the time or else they cannot go to school. Those who are 12 and over, she says, are told they are HIV-positive, because by that point most have heard about HIV/AIDS.
Those children who discover they are HIV-positive go through the depression, fear, and other strong emotions that adults go through.
Margaret Mkoji, head nurse of the children’s AIDS program at Gertrude’s Garden Children’s Hospital, says it is difficult for children to look beyond the eventuality of death.
“When this child gets to know that they are positive, they know that they are going to die very soon,” she said. “Sometimes the child may get to know that they are positive because somebody has told them, ‘you are going to die just the way you are, your mum or dad died.’ So they go into depression, that’s the first thing. They may not want to eat because why should they eat when they’re going to die tomorrow? It’s like they are waiting for death.”
Mkoji says HIV-positive children need a lot of counseling to be aware that they can live positively and that they will not necessarily die tomorrow.
Some schools in Nairobi have begun to address the fear and stigma that most HIV-positive children and adults experience.
Children at Ayany Primary School in the Nairobi slum, Kibera have formed a club that educates other children about HIV/AIDS and, most importantly, teaches them not to reject or abandon those who have the condition.
Voice of America - May 23, 2006
Revision date: July 4, 2011
Last revised: by Andrew G. Epstein, M.D.