HIV status was ‘was our secret to keep & tell’
Njabulo Sibande* was born with HIV. His parents had been planning to tell the teenager until an aunt beat them to it. Njabulo’s parents say the unplanned disclosure has left the teen reeling.
Njabulo’s mother, Kholi, never tested for HIV while she was pregnant so doctors never knew to start her on prevention of mother-to-child HIV transmission (PMTCT) treatment to protect Kholi’s unborn son from contracting the virus.
Although Njabulo has been on antiretroviral (ARV) treatment from an early age, Kholi and her husband Thomas never told the child what the pills were for. They also made sure to remove the labels from the pill bottles before Njabulo could read what was on them.
The pair had been waiting until Njabulo was older to disclose his status to him until an aunt told Njabulo, then just nine years old, that he was HIV positive.
“She had no right disclosing our son’s HIV status because over the years we work so hard to hide it from him,” Kholi told OurHealth. “As parents, we always thought he was too young to understand.”
“Even though there were many conversations about HIV and ARVs, we still saw our baby boy,” she adds.
‘He shut down completely’
Now 13 years old, Njabulo says he always suspected that something was amiss.[quote float= right]“I didn’t believe what my ears had heard because I wanted it so badly not to be true, but it was”
“Growing up, I knew something was different about me because keeping me health was important to my parent and I was always on treatment,” says the teen. “My parents would always tear up the treatment labels.”
“It was always a secret (why) I was on treatment until at the age of nine when I accidentally heard my aunt talking about my HIV status,” Njabulo adds. “At first, I didn’t believe what my ears had heard because I wanted it so badly not to be true, but it was.”
Kholi says she watched her baby boy shut down after the disclosure.
“He completely shut down, blocked his emotions from the whole family and refused our support,” she says. “He started abusing substances and ran away from home. It was then that he defaulted on ARVs.”
‘Never assume a child is too young’
Older brother Thuso watched Njabulo’s downward spiral before referring him to a local youth group.
“I remember every time when he drank, he use say out of nowhere, “Ngine Aids” (I have Aids) and when his was sober denied ever saying such a thing,” Thuso says. “He may think I don’t understand his pain, but I do because we are all affected as well and it doesn’t take a person to be HIV positive to understand such pain.”
“What I like about this group is that there are lessons about HIV, sexually transmitted infections, tuberculosis and condom use… accepting those infected and affected by HIV,” says Njabulo of the group. “We all joined (the group)…for different reason, mine was finding a group where I could feel safe and accepted, and to be where I could have a voice without being judged and questioned.”
Njabulo’s father Thomas says he wishes he had disclosed to his son early.
“The lesson learned is never assume that your kids are too young to understand any situation,” he advises. “Rather be honest with them than to regret your decision later”.
*All names changed to protect the identity of the child