Gail Johnson adopted Nkosi Johnson when he was three years old. Despite being HIV positive, Nkosi is now eleven.

Nkosi dreamed the other night that a voice told him he must die. When Gail asked him if he wanted to die, Nkosi said, “No, not yet.” “Well then,” replied Gail, “We’€™ve got to fight.”

Every night before bedtime, Gail now asks Nkosi, “What are we fighting with?”

“My mind, my heart, my soul, my tummy, my body, my medication, New York and Disneyland,” replies Nkosi.

But Gail is an exception. Telling a child that he or she is HIV positive is a choice few parents or caregivers chose to make.

“How do you sit down and tell a child that they have a virus that will kill them, but you don’€™t know when? What right do we really have to tell them that?” asks Jane Payne, a social worker at Nazareth House.

Instead, counsellors often advise parents and caregivers to wait until the issue is raised by children themselves. But if children don’€™t ask questions, then this may be because they pick up that their illness is a taboo subject and learn to collude with the silence.

Parents invariably don’€™t want their children to know that they are HIV positive, and doctors have to respect parents’€™ wishes says Dr Tammy Meyers, head of the HIV Clinic for Children at Chris Hani Baragwanath Hospital in Soweto.

The subject is particularly difficult for mothers, who often feel that they are to blame for infecting their children, adds Meyers. And apart from fearing the topic of death, parents want to protect their child from rejection. Hurtful prejudice around HIV/AIDS might cause more distress to a child than the knowledge that AIDS is a terminal illness.

But Meyers feels that children should be told the truth about their illness in a gradual, sensitive and age-appropriate way, from as early an age as possible. She argues that children invariably know that something is wrong, and that it would be less frightening for them if they were told the truth about what was happening.

“We need to ask ourselves – is the desire to protect the child because it’€™s right for the child? Or does it reflect our own inability to deal with death?” adds Pierre Brouard, a psychologist at the Centre for the Study of AIDS, University of Pretoria.

Brouard suggests that the trauma a child experiences around the issue of death may well have as much to do with the way family and caregivers deal with it as with anything else.

Gail Johnson told Nkosi that he was HIV positive as soon as she brought him home. From that moment, she says, HIV has been spoken about openly in her home.

“From as early as four to five, I expected him to take responsibility for his HIV and make sure that other children didn’€™t touch his blood. I needed to reassure the other parents that he knew to take responsibility because they all knew he had HIV.”

Gail points out that it was probably a lot easier for her to tell Nkosi that he is HIV positive because she is not his biological mother and did not transmit the virus to him herself.

According to Gail, the terminal nature of HIV/AIDS only came home to Nkosi when his biological mother died three years ago and he asked, “Does everyone with AIDS die?” Nkosi was happy with the answer he received – that people die for lots of reasons, including AIDS.

Now that he’€™s sick himself, however, he needs a lot more reassurance, says Gail. What helps him is the belief that when he dies, he will join his mother in heaven.

“For a child who knows and feels that he is dying, the last thing he needs is to be scared of death. He needs as much peace of mind as possible,” says Gail.

Gail runs Nkosi’€™s Haven, a home for HIV mothers and their children in Berea, Johannesburg. Gail argues that disclosure of HIV status at Nkosi’€™s Haven is a priority.

“Three women have already “disappeared”. These children need to know why they are living here and we need to be able to tell them. I’€™m not prepared to have everyone living in the dark. This is not a daily punting of doom and gloom. Things should be discussed and not hidden.”

Experts agree that children are in fact much more accepting of death than adults are. They argue that the fear that children won’€™t cope with the news of a terminal illness is unfounded.

“What does it mean to be losing your life? A child is innocent of a lot of the garbage of the adult mind. We project complicated understandings of death and dying onto a child,” says Irene Tanchel, counselling manager at St Lukes Hospice in Cape Town.

Tanchel argues that while most people think that children need to be protected from sadness, what they really need is support in their sadness. “With illness and death, it is the child who is prepared who copes better,” she says.

But at Nazareth House, a home for orphaned and abandoned HIV positive children in Cape Town, children are not told that they have HIV/AIDS. This is despite the fact that many of them are already at junior primary school

Jane Payne from Nazareth House points out that while these children do not know that they have HIV/AIDS, they definitely do know that they’€™re not well, that they get sick and that their friends die. But, she insists, they simply don’€™t ask any questions about terminal illness or death.

Perhaps this is because being sick and losing friends is just the ways things are at Nazareth House. Payne suggests that it is also likely that, deprived of a family and home environment, these children are developmentally delayed.

This is not to say that the children don’€™t miss the ones who die. According to Payne, even the little babies sense the loss if another baby dies. And while death is accepted as something that happens, the children also get angry with a seemingly unfeeling God.

“They say things like, “I don’€™t like baby Jesus because he takes my friends away” or “I don’€™t want to play with baby Jesus,” says Payne.

AIDS may not be mentioned by its name, but death is by no means hidden or unspoken at Nazareth House. According to Payne, it is assimilated according to traditional Catholic practices and children attend funerals from the age of three or four.

Experiences at Cotlands Baby Sanctuary in Johannesburg have been different. Here, staff recently had to deal with an eight year old boy with AIDS who knew he was going to die. He would ask, “Is this the time?” whenever he was ill.

“You battle. You have to say, “I don’€™t know.” It’€™s difficult explaining to a child that it’€™s in God’€™s hands,” says Petunia Tsotetsi, a social worker at Cotlands.

But Tsotetsi and her colleagues still believe that it is better for children to know the truth and to confront their fears. What is most frightening for children, she says, is when they know something’€™s wrong but we won’€™t acknowledge it.

There may also be an ethical obligation to tell children their HIV status to prevent transmission to others when children with HIV/AIDS enter adolescence and become sexually active, argues Meyer. The oldest child with HIV at Baragwanath is already twelve. This child’€™s parents are both dead, and his relatives refuse to allow doctors to tell him his diagnosis.

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