Three-year-old Elihle Xulu shrieks with delight when he sees his mother, Nompumelelo, in the clinic’s garden. She kicks a soccer ball for him and he runs panting after it. Then he plants himself on the swing: “Push! Push!” he calls.
The little boy’s exuberance is still like a miracle for 27-year-old Nompumelelo, who feared she might never see her son grow up. Both she and her son are living with HIV.
Inside the busy Durban HIV clinic, Bongi Mthembu*, a shy six-year-old with big eyes, plays at her aunt’s feet while waiting to see a doctor.
The Grade One pupil doesn’t know she has HIV. But she does know that, a few months’ back, she was so sick with diarrhoea that she had to go to hospital and missed the first few months of school.
But now, she says in a tiny voice while twirling a thread from her jacket sleeve, she is “fine”.
For the past three months, Mthembu has been on antiretroviral (ARVs) drugs and she “hasn’t even had a cough”, says her aunt, Zodwa Mthembu*.
Like half the 120 children on ARV treatment at the clinic, both Bongi’s parents are dead and she lives with her aunt and grandparents.
“It was so very painful,” says Zodwa, averting her tear-filled eyes. “Her mother was living in Empangeni. But she came home in May last year being very sick, vomiting blood. Two weeks later, she died.”
Bongi’s father had died in 2000.
The children on ARV treatment at Sinikithemba, McCord Hospital’s HIV/Aids Clinic, tend to be under the age of five, underweight and unaware of their HIV status.
Paediatrician Dr Holly France says that most of her little patients do “fantastically well on ARVs. It turns their lives around.”
Improvement is often noticeable within a month of treatment, and certainly after three months.
Of the 120 kids on treatment, only three have had “significant side effects” from the drugs, says France. Most only experience a little nausea or tiredness in the first few weeks.
Eight months ago, France was working in the children’s ward of a large KwaZulu-Natal hospital that was not offering ARV treatment.
“There were always 40 to 50 patients in the ward and 80% were HIV-positive.
“We treated their opportunistic infections but they didn’t do well. They kept coming back with other infections. We lost an enormous number of them.”
For France, mother of a two-year-old, the work was eating away at her: “It had a very negative effect on staff. Even the care the HIV- positive children should have got was sub-optimal. No one resuscitated an HIV-positive child because there was this perception that they were going to die anyway.”
Being able to prescribe ARVs has made a big difference to France’s professional life.
Her vivid blue eyes sparkle as she describes a mother she had seen earlier that morning. The woman had already lost two babies, one at four months and the other at five months. When she came to McCord with her third child, he weighed four and a half kilograms, scarcely more than a newborn, although he was six months old. He had already been in hospital four times.
“We couldn’t stop his diarrhoea. I thought we were going to lose him and I couldn’t bear for this mother to lose a third child,” says France. “We started him on ARVs on January 20. Now, six months later, he is a normal one-year-old who weighs 10,4kgs.”
Families are most excited, she says, when their children gain weight and start to develop. Sadly, developmental delays are common in HIV- positive children. Many have been sick repeatedly while other children have been learning. In addition, the virus also targets the central nervous system and this can cause developmental problems.
“A significant number of our patients are slow learners because they have lost out in their early years,” says France. “But their development does improve when they are on treatment.”
Although Elihle is three years old, his speech has not developed properly. Mother and son have had a lot to deal with in the past few years — and it is only now that their health has stabilised that Nompumelelo is able to make an appointment for her son with a speech therapist.
Nompumelelo’s partner died in a car crash when she was five months’ pregnant. Concerned that her partner was with another woman when he died, she opted for an HIV test — and discovered that she was living with HIV.
When Elihle was seven months’ old, she plucked up the courage to have him tested too.
“There were those little signs,” says Xulu. “He had thrush and some diarrhoea and a skin rash. The doctor tried to warn me because of the signs. But I really was not expecting it.”
Little Elihle has been on antiretroviral drugs through a private hospital since he was eight months old, but his family could not afford to pay for his mother’s treatment as well and her health declined rapidly.
At that stage, ARVs were not available in public health. Initially, Elihle’s father’s family helped pay for ARVs for him but after a while the money dried up.
Although, by this stage, Nompumelelo needed treatment herself her family could only afford treatment for one of them -— and opted to keep Elihle on treatment at a monthly cost of R800.
This year, Sinikithemba Clinic, which gets a 40% government subsidy, was able to reduce its monthly charges to R65 for children and R130 for adults for all outpatient HIV-care, including antiretroviral treatment, because of a grant from the United States President’s Emergency Fund for Aids Relief.
The fee reduction has made a big difference to Nompumelelo and Zodwa, who say they come to McCord even though they have to pay because they are able to see the same doctor every time and have good relationships with the nurses and counsellors.
Those who cannot afford the fee are referred to government hospitals. But the health department itself concedes that many of its treatment sites are anxious about treating children.
Although the health department’s national ARV treatment guidelines stipulate that babies under six months can only be started on ARVs under the supervision of a paediatrician, many treatment sites refer all children who need treatment to paediatricians. –Health-e News Service.
* Names changed at caregivers’ request.
‘ARV kids’doing well worldwide
Children on antiretroviral (ARV) therapy gained an average of 4kg after 18 months of treatment and only 5,5% experienced side effects, according to a study of 1 840 children presented to the International Aids Society conference in Rio de Janiero last month.
By March, 83,9% of these children were alive and on treatment and their probability of survival after 24 months was 91%, according to the study conducted by Médecins Sans Frontières (MSF) at 22 sites worldwide.
But, warns MSF, “only a fraction of children with HIV/Aids in need of treatment is receiving life-prolonging antiretroviral treatment today. As a result, half of all children with Aids die before their second birthday.”
Barriers to treatment include the lack of paediatric doses of ARVs.
Almost three-quarters of the children in the MSF study had CD4 counts of more than 15% after 18 months of treatment. Children’s CD4 counts are measured as a percentage of the total lymphocytes (white blood cells made up of B and C cells) in the blood. A healthy child will have a CD4 count of more than 25%.
The Department of Health’s treatment guidelines recommend that HIV-positive children over the age of 18 months should be given ARV treatment if their CD4 count is less than 15%. For children under 18 months, treatment is recommended if the child’s CD4 count is less than 20%.
Adults’ CD4 counts are measured by the number of CD4 cells per cubic millimetre of blood, and those with CD4 counts of below 200 are eligible for ARV treatment. — Health-e News Service