Sibusiso (not his real name) is a 10 year-old boy from Soweto who is HIV-positive. His mother, Stella (not her real name), tested positive for HIV in 1999 when she was expecting him.
Prevention of mother-to-child HIV transmission (PMTCT) services had not been introduced in the country at that time.
Sibusiso was born in 2000 and tested positive for HIV at nine months. Due to HIV infection, Sibusiso has had to endure a series of epileptic fits and meningitis. This has resulted in irreparable neurological damage and delayed cognitive development.
‘To start with, my child cannot even properly hold a pen, let alone to write. For the past three years he has been attending a school for children with special needs’, Stella says, in tears.
‘I have taken him to hospital several times complaining about this problem. But, I was told that due to the severity of his epileptic fits, he won’t ever be able to write. That is painful to me’, she says.
‘I teach him how to write but he is short-tempered. I even tell them in hospital and they always tell me that it’s not unusual for children like him to lose temper when they are struggling’, she adds.
Stella had two other children after Sibusiso. The two are HIV-negative as they were born at a time when government had started making Nevirapine available to prevent HIV infection from mother-to-child.
‘I urge government to continue giving pregnant mothers anti-retrovirals (ARVs) to protect babies because these drugs work wonders’, pleads Stella.
‘When I was expecting Sibusiso in 1999 they only conducted blood tests. Had there been PMTCT, my child would have survived from HIV infection. He would have been fine like his siblings. That’s the part that hurts me the most’, she continues.
‘HIV directly impacts the nervous system. A lot of these kids will have developmental delay and they may even progress to have signs and symptoms of cerebral palsy just from the HIV infection. The damage caused by HIV may not necessarily be reversed, but children may improve to some extent developmentally’, says Dr Lee Fairlie, a Paediatrician at the Enhancing Children’s HIV Outcomes (ECHO) clinic at Chris Hani Baragwanath Hospital.
Neliswa Khumalo, a teacher at the Key School in Johannesburg for children with special needs, says Stella must not give up on Sibusiso.
‘He can still be taught. He has a bright future. Sibusiso’s mom needs to sit down with his teacher and identify his challenges. Then they can come up with an individual educational plan suitable for him’, she explains.
Last year, Sibusiso started taking antiretrovirals. But because his brain functions below normal for a child his age, Stella cannot even tell him why he has to take medication every day of his life because he may not understand.
Ncazelo Mlilo, a psycho-social specialist at the Regional Psychosocial Support Initiative (REPSSI), advises Stella not to give him too much information out of fear that he will not be able to process it well.
‘The parent here is dealing with a child who has had neurological problems. Now, the child is 10 years old but they could be operating at an age level that is much less than 10 years old and that needs to be investigated. The child could be two or three years old. She could be trying to talk to him about his HIV status and giving him too much information and giving him information that he cannot take in because cognitively he’s just not operating at that level’, she says.
This story was covered by Health-e News Service in collaboration with Panos Southern Africa ‘ a communication for development NGO.