Circles of sacrifice

HIV can be unforgiving; but a health-care system that fails its most vulnerable represents a particular kind of cruelty. This is how it is for Giyani local *Grace M and her family.

Grace was diagnosed HIV-positive in 2009, when she fell pregnant for the third time. The diagnosis saved her unborn baby, and got Grace started on her ARV treatment. But it also answered the terrible questions about her middle child; such as why the boy had not met his development milestones, and was frequently ill and weak. *Samuel, born in 2002, was also diagnosed HIV-positive.

“When he was a baby he had diarrhoea regularly, and he was always in and out of the clinic,” she says. Nobody thought to test him for HIV. There were also no national guidelines at that time.

There was more devastating news for the family three years later, when Samuel’s granny was also infected with HIV. Grace frequently left her children in her mother’s care while working in Johannesburg.

Much of Grace’s life now revolves around doctors’ visits for her and her son. She’s shunted from clinic to clinic, and to the provincial hospital every month. As an unemployed woman, she relies on her siblings for transport money, and on planned patient transport that she says is patchy at best.

While Grace picks up her ARVs at the local clinic, Samuel’s medicines are dispensed from Nkensani hospital. It is a R42 round trip each for the mother and son. Samuel also has a skin condition that needs a treatment cream not available at their local clinic or at Nkensani Hospital. These meds are available only from Polokwane Hospital. This means that Grace makes a monthly trip to Polokwane to fetch the medicines; and every six months, she has to return with Samuel for a consultation.

For Grace, that trip to the hospital begins a day before she even sets foot in the province’s capital.

She leaves home at around 8am and begins her trip to Nkensani Hospital to start making bookings and to wait. She takes her own food, clothes and blankets, because she has to spend the night on the outpatient benches. Planned patient transport from Nkensani Hospital is scheduled to leave before dawn.

“Sometimes we wait till 10 o’clock, but they tell you that if you’re not there at 4am they will leave without you,” she says.

Once she’s picked up Samuel’s medicines at Polokwane Hospital, it’s another long wait for the return trip to Nkensani Hospital and back home by taxi.

“One time they were able to drop the medicines at Nkensani, but when I tried again they took Samuel’s card and didn’t come back with the cream. Then they just kept telling me to come back. I can’t keep on doing that. It’s better that I just go to Polokwane,” she says.

This is the sacrifice she makes for her child; but it frustrates her that such a small administrative hurdle cannot be overcome. She’ll carry on, because she knows there are tougher days ahead now that Samuel is a teenager and will have many more questions.

Grace recalls how her beloved son was teased at school when he was 11. A child told him he had HIV, and he came home in tears. She dried his tears and told him not to take the taunting to heart. All the time, though, she knows more tears are going to fall; and more sacrifices will have to be made.