Twelve-year-old Nomsa is small, serious and articulate. “My best subject is English. I love reading books,” says the Grade 7 pupil, who wants to be a doctor when she grows up.

But discussing the idea of “growing up” brings tears to her eyes and to those of her paternal grandmother, who sits next to her in the hospital.

For Nomsa learnt that she was HIV positive last year after she became very sick and lost a lot of weight. Having nursed her mother until her death last April, Nomsa is acutely aware that the disease is incurable and that she may not reach adulthood at all. “I feel very sad,” is all Nomsa is able to say of her HIV status. Two big tears squeeze out of her troubled eyes and slide down her cheeks into her worn school uniform. She has told no one about her HIV status. The subject is also taboo at home. “It is only me and auntie who know. I need to find a way to tell her father,” says her grandmother, dabbing her eyes with a handkerchief.

Nomsa is one of about 40 small patients in the waiting room of the HIV clinic for children, held every week at Grey’€™s Hospital in Pietermaritzburg. Although slight and short for her age, Nomsa is doing rather well physically. Her only complaints today are a cough and deteriorating eyesight.

The 200 children who pass through the clinic every month are generally smaller and thinner than average. They suffer a multitude of complaints, most commonly chest infections and skin rashes.

But their caregivers ‘€“ usually grandmothers or foster parents ‘€“ are dedicated to ensuring that they remain healthy for as long as possible, and most of the children are between the ages of 5 and 8.

Dr Kimesh Naidoo, who runs the HIV clinic, says there are two general categories of children with HIV. “There are the fast progressors, who usually show signs of HIV from around three to six months. Most of these die before they are two years old, usually from Pneumocystis Carinii Pneumonia (PCP) and other respiratory infections.

“But around 60% of our patients are slow progressors. They remain relatively asymptomatic until around the age of three, then they start to present with mild infections.”

The slow progressors only started to emerge as the HIV epidemic matured and more older children started to present at hospitals with HIV-related infections. The prevention of mother-to-child HIV transmission programmes are likely to map more accurately the percentage of children infected as babies who are slow progressors.

Sexual abuse plays a small part in HIV infection in children, says Naidoo. The vast majority of his patients ‘€“ including the slow progressors — got the virus from their mothers while in the womb, during labour or through breastfeeding.

“We run a child abuse clinic here on a Friday which sees over 300 patients a year. Last year, only three children came over to the HIV clinic because they were infected as a result of abuse.”

While the clinic sees all children with HIV, it focuses on keeping the slow progressors as well as possible through regularly monitoring.

At every clinic visit, the children see an oral hygienist as well as a doctor, as the mouth, tongue and throat are often the first sites of infection.

They are given vitamin supplements and prophylactic drugs to prevent PCP and other common infections. As good nutrition is a cornerstone of care for the children with HIV, the clinic also gives Pronutro and milk powder to those who are destitute.

“It is more meaningful for us to treat the slow progressors and it makes sense to put our limited resources into them,” says Naidoo.

Clinic staff are acutely aware of how their little patients are affected by their socio-economic conditions. Naidoo stresses to a group of medical students visiting the clinic that it is their duty to help those caring for children with HIV to get care-dependency grants. This is a monthly government grant of R620 for severely disabled children who have special needs.

“Access to this grant depends on a report from a doctor,” Naidoo tells them. “If you want to look after your patients properly, and you see that their caregivers are struggling financially, you must write a letter to the social worker recommending that they get the grant.”

Scientists believe that fast progressors were more likely to have been infected in the womb by mothers with high viral loads. A 1996 study in France, which followed 267 infected babies, found that those born with swollen lymph nodes and an enlarged liver or spleen and a low CD4 count (white blood cells that co-ordinate the body’€™s immune response) were likely to be fast progressors.

Naidoo says that his own deepening understanding about slow progressors, combined with the possibilities offered by anti-retroviral (ARV) drugs, has made it easier for him to deal with the emotional stress of treating HIV-infected children.

“If we keep them going, then maybe they will be able to get anti-retrovirals in a few years. If we add anti-retrovirals, our slow progressors could go to university,” he says.

This is already happening in developed countries. Dr Gareth Tudor-Williams, senior consultant at St Mary’s Hospital in London, looks after over 200 HIV positive children.

“Anti-retroviral drugs have changed the face of my practice,” says Tudor-Williams, who is also chair of the UK’s Paediatric HIV Association. “In the past, the average life expectancy for a child with HIV was around nine years. But now, the bulk of my practice involves helping the children to deal with problems of adolescence. Some of my patients are now at university.”

At Greys, Naidoo supervises 22 children on ARVs, mainly paid for by medical aids or parents’€™ employers.

“There has been a dramatic difference in the health of those children who are taking the drugs properly,” says Naidoo.

He points to a small boy playing in the corner. “Ashraf is six years old and started on ARVs two years ago when he was very sick. His viral load (measure of HIV in the blood) then was 486 154. Now it is undetectable and he’€™s doing very well. He had some bad side effects to begin with, lots of diarrhoea and vomiting, but we mixed the drugs with yoghurts and things have settled.”

Joseph sits on his mother’€™s lap fiddling with his juice bottle. The bony 5-year-old boy was adopted at the age of one, and his mother calls him “a miracle child”.

He is thin, has oral thrush that won’€™t go away, scabies and a persistent cough. A year ago, his mother had his CD4 count taken and it was an incredibly low 24. A healthy child’€™s CD4 count is over 600 (higher if they are under a year). Doctors usually recommend ARVs once a person with HIV has a CD4 count of 200.

Remarkably, Joseph is still walking around and does not complain of pain.

“I want to start the drugs,” says his mother, who has been a regular visitor to the clinic for the past four years.

It is hard for Naidoo to explain to the woman, who is clearly dedicated to caring for her son but not well-off, that the drugs are very expensive.

“I know you want to do it, but I want you to think about it for a week,” he says. “Before he starts, we will need to check his CD4 count and viral load. That has to be done by a private laboratory and it costs R800. Triple therapy, [three drugs] which is the optimal treatment, costs R600 to R800 a month. If you opt for two drugs, the cost is around R400. Then we have to do the CD4 and viral load tests twice a year.”

He writes the figures out on a piece of paper. Joseph’€™s mother takes the paper and puts it carefully into her bag, saying as she does: “I will do it. The challenge now is to find the money.” ‘€“ Health-e News Service.

* Given the level of stigma associated with HIV/AIDS which often results in cruelty to people with HIV, caregivers asked for the names of their children to be changed.