“We try to live as normal of a life as possible,” says Charlene Naidoo*, sitting on the edge of the black leather couch in the living room of her Mayfair home in Johannesburg. “But when we go to the shops people stare. Children will come and stand by her wheelchair and just stare at her.”
Charlene’s smile is sad. “Sometimes I look at other mothers and daughters that age walking in the mall and shopping, and I think ‘that could have been us’.”
The hands of her 16-year-old daughter Cathy* are turned sideways, her knees inward and her limbs are rigid. Cathy has cerebral palsy, a physical disability that “affects movement, posture and co-ordination”, according to the United Cerebral Palsy Association of South Africa. It is caused by damage to the part of the brain that controls motor function.
It took Charlene* and her husband Roy* years to come to terms with their daughter’s diagnosis. (Photos: Madelene Cronjé, M&G)
The association says that the damage to or delayed development of the brain can occur as a result of a problem in the early stages of pregnancy, a “difficult or premature birth”, but in some cases the cause of cerebral palsy is unknown.
Charlene says her daughter sustained brain damage at birth when she [Charlene] had an allergic reaction to medication the doctors used to induce labour.
“I had an asthmatic attack that put me into a coma. They [doctors] only took her out [by caesarean section] a couple of hours later, once I had been stabilised. During that time the oxygen supply to the placenta had shut down and she didn’t get any oxygen,” says Charlene.
Although symptoms of cerebral palsy vary, the United States government’s Centres for Disease Control and Prevention says that delays in reaching milestones such as rolling over, sitting up, standing and walking could be signs of the condition in children.
“When she was born, Cathy didn’t look disabled. But when she turned four months old she couldn’t swallow her food when we fed her. So I took her to the hospital, but was told that ‘these kinds of things happen with first-time mothers’ and they sent us home,” Charlene says. “At nine months old I took her back [to the hospital] because she was not sitting on her own and she was trying to turn over but couldn’t.”
After a series of tests doctors found that “the parts of her [Cathy’s] brain that control all of her muscles were damaged and that includes her tongue, so she can’t even speak”.
“Sometimes a special-needs diagnosis is only made when the child is two or three years old because it is not picked up as soon as the child is born. When parents get to know that their child is now a special needs child, it’s very overwhelming,” says Zafreen Valli, medical doctor and chairperson of the nongovernmental organisation Care4u2 Respite and Outreach, which works with families of children with severe disabilities in Johannesburg.
Cathy takes a walk with her father every afternoon.
This was true for Charlene and her husband Roy*, who say it took them years to come to terms with their daughter’s diagnosis.
“Being young, first-time parents, when we heard the words ‘cerebral palsy’ we immediately asked, ‘What do we have to do? What’s the medication or treatment for her to get better, for her to start walking and talking?'” Roy recalls. “That’s how naive we were back then. We didn’t know what cerebral palsy was all about. And then it really hits you that … “
Charlene smiles at her husband. She knows how he feels and finishes his sentence for him: “When the doctor told us that this is a permanent disability, it took some time to wrap ourselves around what was happening, because we had never been faced with disability before.”
Valli says that as difficult as it is for parents to accept their children being diagnosed with cerebral palsy, it is equally important for them to get informed about the condition.
“People should understand cerebral palsy is neither infectious nor contagious. There is no cure for cerebral palsy, we have to treat the symptoms and complications as they arise,” she says.
Cathy navigates around her own home with relative ease.
Cerebral palsy, according to the Centres for Disease Control, does not get worse, but the symptoms can change over time. “It was easier to cope when she was little and we could carry her around, but now as she is growing older she is also getting heavier and her muscles are getting stiffer,” says Charlene.
“When she was around 11 or 12 years old and she would see other children her age doing everything that she can’t … it frustrated her very much. It still does. At that time we were walking on eggshells around her,” Roy says. “She refused to go anywhere.”
Charlene adds: “When we forced her [to go somewhere] she would throw a tantrum in her wheelchair.”
Looking towards the open door to his daughter’s room Roy says: “Our lives revolve around her. We don’t really go anywhere much because of her.”
Valli says parents and caregivers of children with severe disabilities often neglect their own wellbeing.
“Looking after a special needs individual can be very tiresome because you’re looking after them 24/7, as in bathing them, feeding them, clothing them, giving them medication. You are constantly providing for them and, as a result, you tend to forget yourself.”
Cathy, like any teenager, spends a lot of time listening to music in her room.
With no family in Johannesburg [both their families are in Durban] to help them to take care of Cathy, Charlene and Roy take turns in seeing to her needs and those of their nine-year-old son, who is not disabled.
“Charlene gives her a bath in the morning, then I help get her dressed. Then we have to give her medication and breakfast. When she gets home from school one of us has to help her with everything she needs, whether there’s homework or when she has to eat or wants her book or take her for a walk,” says Roy.
Valli says the daily routine that comes with taking care of a child with a severe disability can have adverse effects, not only on the primary caregiver, but also on the whole family. “Sometimes families and couples just need a break from this reality, a small break to have time to chat to each other.”
So, two years ago, when a therapist at Forest Town School for children with disabilities, where their daughter is a pupil, offered Charlene and Roy an all-expenses-paid weekend away, the couple thought it was a joke. They had never been on holiday before. “It’s something we have never thought about,” says Charlene.
Cathy and her brother fight like most siblings.
“Although the getaway was only for a weekend, it really helped. It broke the monotony of the every-day,” says Charlene.
“For the first time since we got married 17 years ago we could actually walk together holding hands, quietly looking at things [around us] without any interruptions and without the feeling of having to rush home to do something.”
Roy and Charlene’s weekend away is also known as a respite, which is a short break for friends or family members who take care of people with severe disabilities. Not normally available in South Africa, respite programmes are legislated in some developed countries. For example, the Australian health department has a national respite for carers programme, which helps caregivers to “take a break from caring”.
Valli’s organisation hopes to steer South Africa in the same direction.
“Taking care of someone with cerebral palsy is a full-time job and it costs a lot of money. It puts pressures on other aspects of parents’ lives, such as on marriages and relations with extended family.
“Our parents are so worn out but they keep pushing because they have no other choice. But in order to take care of others you must start with yourself,” says Valli.
Cerebral palsy is caused by damage to the part of the brain that controls motor function.
“All parents have a difficult time whether your child is ‘normal’ or disabled. We all have it hard,” says Charlene. “Some people don’t see the pressure you are under or what you do. They also don’t really understand what you go through in your mind and physically every day.”
Charlene says their weekend retreat was “rejuvenating” and helped them to prepare to deal with the next phase of their daughter’s life.
“She only has next year left [in school] and then, after that, what do we do? That’s been heavy on our minds. When she was little it was easier and then she grew into the teenage years and we have to contend with all that. But we just take it one day at a time,” says Roy.
* Not their real names.
Support and treatment in South Africa
According to a 2007 article in the South African Journal of Child Health, cerebral palsy is the most “commonly occurring physical disability in childhood”. The article further states that cerebral palsy rates “are thought to be similar in developed and developing countries”.
“We don’t know the rates in South Africa but the figure that is quoted internationally is that three children per 1?000 live births will develop cerebral palsy,” said Gillian Saloojee, head of the child health nongovernmental organisation Malamulele Onward. Saloojee said the figure may be slightly higher in South Africa but the level of care that children with cerebral palsy receive is more important.
“In developed countries children have access to early intervention, but in developing countries our children struggle to reach their full potential because they don’t always receive early intervention [such as intensive physiotherapy and occupational therapy] so the burden of disability is more severe.”
More research is needed on cerebral palsy in South Africa, said Saloojee; for example, “we don’t know what impact HIV has on the condition”. Many studies have associated HIV with neurological complications.
Cerebral palsy is a physical disability that affects movement, posture and co-ordination. Although the symptoms differ between individuals, those who are severely affected by the condition may not be able to do basic things such as walking and talking and may need full-time care. In many cases children with severe disabilities are taken care of in the family home by their parents or family members.
Saloojee’s organisation provides training to mothers of children with cerebral palsy in rural areas on how to care for their children at home.
A 2013 Journal of Neurosciences in Rural Practice article that looked into the psychological impact of cerebral palsy on families in Africa found that the stress associated with the condition “is known to be one of the most depressing conditions on families”. Problems experienced by the families surveyed include job loss, financial strain and the breakdown of marriages.
The study found that managing the chronic health problems of a child with cerebral palsy along with coping with the demands of everyday life can have a detrimental effect on both the physical and psychological wellbeing of parents and caregivers.
“Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. Children with cerebral palsy have also been reported to exhibit psychological problems and this adds to the burden of care,” the article states.
The article reports that parents of children with cerebral palsy experience higher levels of stress than other parents. This stress is often perpetuated by the attitudes of some community members, which also adds psychological trauma. In some societies, the study found, children with disabilities are viewed “as a punishment from the ‘gods’ for a wrong act committed by a family member, most especially the mother”.
It was also found that parents of children with cerebral palsy relied heavily on informal support structures such as extended families. The South African Social Security Agency provides a caregiver grant of R1?350 a month for parents of children with severe disability. There are a number of nongovernmental organisations that provide support through community outreach and awareness programmes to families of individuals with cerebral palsy.
Early signs of cerebral palsy in a baby younger than six months:
- They might feel stiff;
- They might feel floppy;
- When cradled in your arms, they seem to overextend their back and neck, constantly acting as if they are pushing away; and
- When picked up, their legs get stiff and they cross or scissor.
In a baby older than six months:
- They don’t roll over in either direction;
- They can’t bring their hands together;
- They have difficulty bringing their hands to their mouth; and
- They reach out with only one hand, keeping the other in a fist.
In a baby older than 10 months:
- They crawl in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg; and
- They scoot around on their buttocks or hop on their knees, but do not crawl on all fours.
Source: Centres for Disease Control and Prevention