Sibusiso (not his real name) life with HIV began before he could even reach his first birthday. He was only nine months old.

Before discovering his HIV status he had TB. He was treated and cured. He then had meningitis. After that, he had terrible epileptic fits. I took him to Leratong Hospital where doctors insisted on testing him for HIV and I consented. He tested HIV-positive, recalls his mother, Stella (not her real name).

That was the beginning of a painful journey for both mother and child.

I was sent from pillar to post looking for a solution. The baby was always sick and they only gave him treatment for epilepsy, says Stella.  

At that time both mother and baby could not access antiretroviral therapy through the public health sector. The health sector could only provide Stella, who is also HIV-positive, with Bactrim to alleviate and prevent chest infections. Sibusiso was strong enough to survive all these years without needing AIDS treatment.

He had a high CD 4 count. He started antiretroviral therapy (ART) only in June last year, says Stella.

Sibusiso has not suffered even a single epileptic fit since he began taking antiretrovirals (ARVs). However, his mother is reluctant to stop his treatment for epilepsy.

The impact of the HI virus on Sibusiso is obvious from his appearance, which resembles that of a child half his age. Like many parents in her situation, Stella finds it extremely difficult to tell Sibusiso why he has to take antiretrovirals.  

I  only tell him that he is taking ARVs. It becomes difficult for me to tell him why, she says.

But Stella is open about her own HIV status in her community. The fact that people know, she believes, is preventing her from telling her son that he is also HIV-positive.

Children on the street always say ‘hey, you have AIDS’, merely because of his tiny body. So, that hurts me and stops me from saying more. This is because I don’t  want to hurt him further by telling him he has HIV, Stella says, fighting back tears.

I just say to him, ‘my son… always tell them that unlike them you know your HIV-positive status. You do not yet have AIDS’, she says.

I  haven’t had the right time to explain why he is taking ARVs and what HIV is, she adds.

But Sibusiso is curious.

At times he asks about the purpose of ARVs. He thinks they form part of his epilepsy treatment, says his mother.

 This is the part where I need someone to explain to him why he is taking ARVs. For me it’s difficult, she continues.

Clinical Psychologist, Noxolo Dlephu, has seen many parents in Stella’s position.

Before parents disclose, they need to get professional help so that they know what information is required and what to expect from the child. If a child has questions you should be able to answer, she says.

However, she says seeking information is only the first step ahead of disclosure.

When a parent discloses she or he must expect the child to be shocked and confused. As a parent, do not give your child too much information at one go. You need to do that gradually, depending on your readiness as a parent. Some parents disclose to children as young as four, Dlephu says.  

Asked whether it is necessary to disclose as a parent to your child, she said:

It is a must for a parent to disclose to their child. This is because is not good for the child to find out such information from outsiders. Also, with the advent of ARVs, children live longer and can reach the adolescent stage where they experiment with sex and if HIV has not been disclosed, they could end up unknowingly infecting others.

The fear of stigma is one of the key reasons why parents struggle with disclosing to their children that they have HIV.

With disclosure, you need to make sure you are safe in doing it. There are consequences to disclosure because you are dealing with communities that are not aware, people who are ignorant, people who have their own fears, cautions Ncazelo Mlilo, a psycho-social specialist.  

Mlilo advises parents to take into account the age of their children as well as the level of their psycho-social maturity before they can tell them that they have HIV.

It’s being open in an age-appropriate way about who to tell and who not to tell, because children need to know, she says.

This story was covered by Health-e News Service in collaboration with Panos Southern Africa –  a communication for development NGO.