Botched births and infections can leave many babies with a life-long inheritance: Cerebral palsy. Many will be dependent on caregivers for their entire lives, but could switching up the way we think about treating the condition provide children and carers some respite?
Cebisa Gwadiso’s cell phone rings. She’s sitting on a bed in her peach pink mud hut.
It’s her sister, a doctor, who is navigating her way over the Eastern Cape’s bumpy gravel roads to Cebisa’s home in Elliotdale about 55 kilometres from Mthatha.
Her sister is coming for the Christmas holidays. In particular, Cebisa wants her sister to meet the latest addition to the family.
Cebisa is slightly worried.
She had noticed her daughter’s head seemed a bit too big for her body. And the baby struggled to make eye contact, but as a young mother, she didn’t think too much of it.
Born premature, nine-month-old Luseko is tiny.
When Cebisa‘s older sister arrives, she says hello before crouching to fawn over the little girl in Cebisa’s arms.
She looks down at the baby, and stops short: “There’s something wrong here.”
The big day: Patients show off at this hospital’s annual wheelchair race
It’s just before 9:00 in the morning and the humid air promises a scorching hot day at Madwaleni Hospital, tucked away in the rolling green hills a 20-minute taxi drive from Cebisa’s home.
A line of 20 women has formed on the tar road, just outside the entrance to the hospital grounds. In front of each sits an excited toddler strapped into a black buggy. “Madwaleni Hospital Rolling Hills 2019” is blazoned across each tot’s chest in their matching yellow T-shirts.
To one side, a member of the hospital rehabilitation staff donning a bright orange safety vest starts to count down.
“One,” starts the therapist. The women tighten their grips on the prams’ handlebars in anticipation.
“Two,” continues the hospital worker.
Finally, she screams: “Go!”
Each one of the wriggling children in this group has cerebral palsy, a muscle disorder that can result in involuntary spasms. The condition is often caused when the developing brain is damaged, for instance, when babies don’t get enough oxygen during birth, explains the United States medical organisation Mayo Clinic on its website.
When the whistle blows, the line of women explodes into motion, hurtling downhill handbags and prams in tow. But these are no ordinary buggies — perched on four heavy-duty wheels, they’re specially designed to deal with the area’s rugged terrain. Extra cushions help provide the added support to sit upright that their muscles sometimes can’t.
It’s hard to know exactly how many South African children have cerebral palsy. There’s very little local data available.
But, according to research published in the South African Medical Journal in 2002, 10 in 1 000 children were found to be living with the disorder when researchers screened about 2 000 children in a rural, northern district of KwaZulu-Natal. That’s five times the global average, which is about 0.2%, reveals a review of 49 studies published in Developmental Medicine & Child Neurology in 2013.
What’s behind the high number of cases in South Africa and the rest of the continent remains mostly unresearched, but experts in an article for The Lancet medical journal say that poor health systems and a lack of healthcare workers likely play a role.
On the makeshift race course outside Madwaleni Hospital, Cebisa and Luseko emerge from the pack, flying past supporters who’ve fashioned colourful streamers out of white and blue plastic shopping bags.
The pair reach the end of the course, turning around to make their way back to the finish line. Panting, they cross the finish line as the crowd cheers.
“She loves the race,” Cebisa says, seated on a hospital bench afterwards.
The mom-and-daughter duo were hoping to win, but another team beat them to the prize.
That’s okay, she says, fun was their main goal for the day, anyway.
The annual Madwaleni Hospital Rolling challenge isn’t just for children with cerebral palsy. It draws people with disabilities from around the OR Tambo District. Alongside the buggy race, men and women compete in wheelchair relays while partially-paralysed kiddies partake in footraces.
The event was dreamed up by the hospital’s rehabilitation team comprised of healthcare workers such as occupational, physio, maybe even speech therapists. In the hospital’s rehab ward named Siyaphila, they work with children like Luseko on everything from posture to how to go to the bathroom — and they’re finding new ways to support tots and the mothers and grandmothers who care for them.
Getting used to a whole new way of life
Back in Elliotdale, Cebisa Gwadiso sets out on the winding road to Madwaleni Hospital. Hours later, it’s finally her turn to be helped. The doctor looks at Luseko and says: “Your child has cerebral palsy.”
That was three years ago. A lot has changed since then.
At the time, Cebisa had been accepted into a human resource management course at a local college. But once she got her daughter’s diagnosis, she switched to a distance learning programme so that she could keep studying in between caring for Luseko, who needs around the clock attention.
Her mother helps out every now and again, Cebisa says, but ultimately she takes care of Luseko on her own and as a result, she cannot get a steady job.
Caring for a child with severe cerebral palsy can be hard on parents.
A 2005 study carried out among almost 470 caregivers — mainly mothers — of children with cerebral palsy found the strain of taking care of a child negatively impacted parents’ mental and physical wellbeing. And, whether you have money at your disposal to pay for treatments, the paper published in the journal Pediatrics suggests, also has a bearing on how stressed and sick you’re likely to become.
But in the Canadian study, caregivers who felt more confident about their skills to care for their children’s special needs were more likely to fair better psychologically than their peers as was being able to use strategies to manage stress.
Cebisa is conflicted as she considers the last couple of years. She moves around in her seat uncomfortably, and says: “Let’s not talk about it anymore. I had to stop everything – I stopped my life.”
While Cebisa is still speaking, Luseko’s body suddenly goes stiff. Her back arches, and her neck cranks downwards.
Unphased, Cebisa calmly adjusts Luseko’s arms, allowing the movement.
This event, which looks like a long involuntary muscle convulsion, is something that many children with Luseko’s form of cerebral palsy experience, says Erica Bourn, an occupational therapist at Siyaphila.
She explains: “The tightness in their muscles fluctuates. So sometimes, if the child is excited or upset, they might push back against it – that’s why it looks like a spasm.”
Cebisa knows exactly how to calm her baby down. She expertly moves Luseko’s body so that she’s comfortable. When Cebisa holds her this way, it’s far more difficult for the little girl to bend quite so much the next time.
She says, smiling: “You see how much she has loosened up?”
A week-long sleepover in hospital? Here’s why it might just work
This is one of the many tricks she’s learnt from the rehabilitation team at Siyaphila. Siyaphila hosts week-long intensive block therapy sessions in which patients and their caregivers book into the hospital and work towards specific goals each day.
For cerebral palsy patients like Luseko, the team might, for example, help to stretch out their muscles, or teach them how to use a special apparatus called a standing frame that allows them to be upright at say, the kitchen table, so that they can participate in a family dinner, Bourn explains.
This type of intensive therapy gets results, research has shown.
In rural settings such as the Eastern Cape, there are often too few therapists to treat all the children that need help, and most get just one day of therapy a month, if that.
As a result, hands-on therapy, which helps to strengthen children’s muscles, often ends up being replaced with the stretching exercises parents are expected to do at home, explains Gillian Saloojee, founder and former director of the cerebral palsy nonprofit organisation, Malamulele Onward.
So, from 2007, the team at Malamulele Onward embarked on a series of studies to find out how well longer, intensive therapy really works, especially for children living in rural areas.
For one of the studies, conducted in 2012, researchers split 73 children at a KwaZulu-Natal hospital into three groups: One group received an hour and 15 minutes of occupational, speech or physiotherapy for five consecutive days. Their parents also got training for two hours each day.
Meanwhile, a second bunch got no intensive therapy, but their parents got three hours of training for five days. The last bunch of children got the usual, once-off monthly care they were used to.
The second group, which got five days of intense therapy, showed the most significant improvements in their ability to, for instance, communicate, walk or eat.
Saloojee explains: “It’s far better than monthly sessions. It would be ideal if all children could get two blocks of therapy each year.”
The results from this study and others in the series have been presented at global conferences including The International Conference on Cerebral Palsy and Other Childhood-Onset Disabilities in Stockholm in 2016. The research has formed the basis of Malamulele Onward’s work with children living with cerebral palsy children not only in South Africa for more than a decade but also as far afield on the continent as Uganda.
Globally, a review of research conducted between 1996 and 2007 on children with cerebral palsy who got an hour of therapy for five consecutive days showed more improvement in their muscle movement, than children who got therapy only once or twice a week.
But back at Madwaleni Hospital in the rural Eastern Cape, switching patients from monthly sessions to a weeklong stay at the hospital does come at a price, says the facility’s acting clinical manager Andrew Miller.
Keeping patients for longer pushes up laundry, food, and cleaning costs slightly. However, since the building that is now being used for block therapy used to be one of the hospital’s TB wards anyway, the increase didn’t break the bank.
Miller explains: “We needed buy-in from the nurses, to make sure they would take care of patients while they’re sleeping in hospital. Luckily, patients booked in for therapy aren’t critically ill, so only one nurse is necessary.”
Therapy isn’t just for patients – it’s for parents too
At Siyaphila, it’s not just the patients who get therapy. The rehabilitation unit also has three specially-trained assistants who help teach parents the ins and outs of raising a child with cerebral palsy.
They’re called “Carer-2-Carer” moms.
They should know what to do, their children are living with cerebral palsy too.
“It’s hard to raise a disabled child. You need a great deal of help with everything,” says Nontembeko Bakala, one of the peer-educators that helped Cebisa Gwadiso.
Life wouldn’t quite be the same without Bakala’s help, Cebisa says.
She explains: “The Carer-2-Carer moms teach us everything – how to hold the children, and how to feed them.”
The biggest lesson?
Patience, she says.
She explains: “You might be in a hurry, but you have to do things the child’s way.”
Bakala works with about 20 moms like Cebisa each month, and she always reminds them to keep taking their babies to therapy at Siyaphila.
“That’s where help for their children will come from, that’s where you’ll find the knowledge that will make it easier to care for your child,” Bakala says.
She is one of 60 parents in the country who have been taught to become peer-educators for other people raising children with cerebral palsy.
The organisation that trained her is none other than Saloojee’s Malamulele Onward. Back in the early 2000s, when Saloojee and her colleagues were travelling to rural areas to provide block therapy for children with cerebral palsy, the team realised that just popping in and out of communities a few times a year wasn’t enough.
They needed people who could keep up the support and therapy, even once the Malamulele specialists had gone back home.
Saloojee says: “Who better than mothers to do this? Parents are their childrens’ strongest advocates.”
Today, her organisation continues to provide six-week training courses to coach parents of children with cerebral palsy to be able to explain the condition to other parents, carer to carer. And, to teach them ways to cope.
Ideally, these peer educators move on to helping out at hospitals and become a valuable source of knowledge for neighbours in their communities too.
But there’s an age-old snag: money.
Malamulele Onward originally advertised their course nationally to rural hospitals, promising to train parents for free if the facilities could cover the costs of an hourly stipend of about R25 once the trainers are back home.
The Carer-2-Carer trainees are looking after their own children too, so they can only work between 30 and 60 hours a month. But, for many facilities, even this meagre remuneration proved too much to ask, and the nonprofit had no way to hold facility managers to their promise.
Now, the project relies mainly on donor funding. Even so, Malamulele Onward can only afford to pay for 18 of the 30 Carer-2-Carer moms who are currently available to work.
As for the rest, their payment is left up to the generosity of good samaritans. At some hospitals, for example, therapy teams have paid the few thousand rands per month from their own pockets. Elsewhere, the moms continued working with no payment, forking out transport costs from their own pockets.
Unfortunately, not all hospitals have been this welcoming. One facility has even banned the peer educators whose help has been so important to people like Cebisa.
Saloojee explains: “There’s a perception that having the carers there creates more work. Some therapists feel threatened by their knowledge and skills.”
With the right training, moms can help turn stress into serenity
Back at Madwaleni Hospital, speech therapist Sarah Wilkins says having the Carer-2-Carer moms around has taken a lot of stress off her rehabilitation team.
When moms and their children come to the hospital for block therapy, she says, the Carer-2-Carer team teaches the parents, giving the therapy team more time to get into intensive therapy with the children.
The moms also play a vital role as a link between the communities and the hospital. They often check in with the new mothers at home to see what they need.
Says Wilkins: “They know who all the children are, where they live, and what their needs are.”
So, by the time block therapy starts, the Carer-2-Carer moms are often prepared with tailored lessons for certain families.
But even Madwaleni Hospital has had some hiccups, Wilkins admits.
Mostly, the therapists have had to learn to relinquish some of their tasks to the Carer-2-Carer moms to avoid an overlap in activities. Once they did, Wilkins says, they realised these community workers were a huge asset to the therapy process if they have enough independence, so that they can use their skills to help parents as their needs change.
Says Wilkins: “We can reach far more children with their help.”
For Cebisa, the Carer-2-Carer team has taught her more than just massages and feeding techniques.
They’ve also helped her deal with the emotional component of raising her baby — learning about Luseko has brought her a sense of serenity.
She explains: “Even though I live with depression, Luseko has become my peaceful place.” And with a little help from the team at Siyaphila, even the stressful times improved.
“Sometimes I think I’m going to lose my mind, but then I just look at my child and no matter how much stress she is causing, you just think ‘oh, my baby, don’t you cry’.”
Gwadiso smiles, pecks her daughter on her forehead and says: “Cerebral palsy is a way of life.”