Disabled S. African Children Struggle with Poor Health Care

This is Part Two of a five-part series on Child Health in South Africa
Continue to Parts: 1 / 2 / 3 / 4 / 5

ZIDINDI, SOUTH AFRICA -- A few days after providing basic health advice to a young mother who’d just given birth, community health worker Ncedisa Paul received a frantic phone call from the infant’s grandmother.

It was time for the child to be immunized against polio. But none of the clinics in the Zidindi district in South Africa’s Eastern Cape province had the vaccine.

​“I thought the gogo (granny) was making a mistake so I picked them all up in my car and we went to the nearest clinic.... There we were told by the nurse that there’s only BCG (tuberculosis immunization), there’s no polio (vaccine),” Paul recalled. “I took them to three other clinics, but there as well there was no polio (vaccine). So I had to take the mother and her son back to their home, without immunization against polio. The child is not even immunized, not even now.”

Like many other children in isolated parts of South Africa, the baby boy remains in danger of contracting an infectious disease that could paralyze him.

Paul’s story offers further evidence of the generally poor state of public healthcare in South Africa. Regular shortages of even the most basic of medicines, and the absence of basic health services, remain common throughout the country.

Paul maintained, “It is children who are suffering most because of this situation. Can you imagine that thousands of our kids become disabled every year because of completely preventable illnesses?”

Dangerous delays

In Zidindi, among the rolling emerald green hills of the district and in the dusty village streets, it’s common to see young people hobbling around on homemade crutches, their legs twisted and lame.

A physiotherapist in the area, Laura Grobicki, said when people here are injured, they’re too poor to afford to pay for the transport that would allow them to immediately access healthcare.

Health facilities in the region are sparse, and most people walk hours on end to the nearest clinic or hospital.

“We have a lot of people who have a lot of conditions which cause them to have disabilities which you wouldn’t have in a better resourced setting, in a place where they could get care quickly,” Grobicki explained. “If they’ve broken their leg for example, they might wait three months in order to get surgery. So when they get surgery, the surgeons have to re-break their bone, and when it gets set, it doesn’t set properly. So they can’t bend and straighten their knee and they never get that range back. So they will always have a limp.”

Grobicki does her best to reach injured patients and to treat them before they’re permanently disabled. But she’s a rarity. Physiotherapists are in short supply in South Africa’s public health sphere. The government says it can’t afford their services and most are in private practice, where they earn higher salaries.

Cerebral palsy common

But of all the disabilities that Grobicki deals with, she said pediatric cerebral palsy is the most common.

“Women go into labor late at night. They cannot afford to get a car here, or they can’t walk that distance over the hills, through the rivers, to get to the hospital,” she explained.

So the women give birth at home, sometimes with terrible consequences.

“When there are problems with a baby, there’s no medical help available and so their babies are brain damaged,” said Grobicki.

Zidindi also has a very high HIV-infection rate. Mothers often pass the virus on to their babies during birth. HIV attacks the babies’ brains and frequently results in cerebral palsy.

Grobicki’s colleague, occupational therapist Shannon Morgan, said, “We’ve got over a hundred kids with cerebral palsy that we need to see as regularly as possible and we can’t see them…all every month.”

She said this is immensely frustrating for both therapists and patients.

“Some mothers just give up on seeing us and they disappear with their sick children into the bush. They have no fixed addresses. You try and find patients and you can’t find them; it’s really difficult to follow them up,” said Morgan.

‘Bewitched’

To make matters worse, belief in the supernatural remains strong in some parts of the Eastern Cape, including Zidindi. Many local Xhosa people believe that children with cerebral palsy are bewitched, or cursed. As such, brain damaged youngsters are sometimes shunned and their relatives are ashamed of them.

Parents often hide their cerebral palsied children away from the community, condemning them to a life basically spent in bed, with no rehabilitation, and consequently no meaningful interaction with other people and no ability to communicate, Morgan explained.

“Kids like this just decay; they die slow, painful deaths,” she added.

Morgan and Grobicki are focused on rescuing brain damaged children from fates like this. They teach mothers how to exercise their disabled children in various positions and how to play with them, to strengthen their muscles and to stimulate their minds.

Cerebral palsied children helped like this live much more rewarding and much longer lives, said Grobicki.

Wheelchairs fall apart

The therapists constantly appeal to the state for adequate wheelchairs for their disabled patients.

“We try to give the children nice wheelchairs that will prevent deformities in their backs that could lead to breathing or eating problems later. You get special wheelchairs that are built according to a child’s body, a posture wheelchair,” said Morgan.

Such devices can also be custom-built to be much stronger and with better suspension, so that they can be used in the rough terrain of Zidindi, where there are few tarred roads.

But, added Morgan, the government provides only cheaper, standard wheelchairs to the hospitals in the area.

“Those chairs fall apart in a year, and then they’re useless to everyone. And anyway, I’ve tried to wheel one of those standard wheelchairs around on these hills; it’s crazy, it’s ridiculous. You fall out; you cannot do it on your own. And if we’re saying to disabled people, ‘I’m sorry; you can’t push yourself anywhere. You’ll need people to push you everywhere for the rest of your life,’ that’s even more disabling,” she said.

‘Amazing’ women

A doctor working in Zidindi, Taryn Gaunt, said for every person who labels disabled people cursed, there are many other amazing women in the area who sacrifice everything for their children and grandchildren.

“They give up their lives for children with serious conditions like cerebral palsy. You tell them, ‘you need to do this, this and this.’ Now those things would be hard enough for any privileged person to do, but these poor women manage and endure,” said Gaunt.

As an example, she recalled a woman whose grandson is infected with HIV.

“She brings him to the hospital so faithfully. He’s been on ARVs (antiretroviral medicines) for 56 months and he’s getting better because she gives the treatment exactly right every day. She works everything out and takes her little syringe and makes sure he takes the right amount of medicine even though she’s not educated, but she does everything perfectly. There are so many people here like that,” said Gaunt.

Morgan said if it wasn’t for her patients, she would have left Zidindi a long time ago.

“I was talking with this woman this morning. Her three year old daughter has cerebral palsy. I asked her, ‘What makes you happy about your child?’ And she replied, ‘I am happy because she’s alive.’ I can guarantee you the response in a more privileged area would have been much different,” she said. “Stuff like that just touches you. You’re like, ‘Life is so hard here already and now you have a child with cerebral palsy, but you’re just happy that she’s alive.’ Those are the kind of stories that keep you going.”

In many areas of South Africa, where children continue to suffer horrific disabilities and adequate care for them is rare, it’s the “human spirit of defiance, that refusal to surrender,” that’s the only buffer preventing death and preserving life, said Grobicki.