Cerebral palsy is the biggest cause of childhood disability in South Africa. Margot Bertelsmann meets two affected families, as well as the organisation that’s bringing care services into our communities
TUMELO “TUMI” MATLOU, 31, has three children: Koketso (13), Kgomotso (9), and Tsepiso, her boy, is eight. She lives in Daveyton with her husband, Godfrey. But her life is not ordinary: Kgomotso has cerebral palsy and needs full-time care.
“I had several scans during my pregnancy, and no problems were detected until, at my last check-up, the clinic sister told me that the baby’s heart was not beating well. She then referred me to hospital, where they found cerebrospinal fluid (CSF) inside my baby’s head.” The baby had something called hydrocephalus, or water on the brain. “I wasn’t sure what that was.
I don’t remember anyone mentioning cerebral palsy (CP),” she says. “They gave me the option to have a Caesar or to abort my baby. Well, I said I was a giver of life, not a taker,” Tumi recalls.
Kgomotso was born in June 2009. According to Tumi, she appeared to be a normal child who sucked well and showed no sign of spasticity.
“She did have the big head that indicates there’s water on the brain. And at three weeks, she had an op to insert a shunt into her skull to drain the fluid. We kept going back to hospital to have it repaired. As she grew, I noticed changes and became worried. She got more stiff. She wasn’t sitting...”
Tumi says when Kgomotso had a seizure at age four, she took her to hospital, and that’s the first time she heard the term CP. “I was told she had aspiration pneumonia,” she says. “This can happen when a person’s muscles are paralysed, and the food goes into the air pipe, and into the lungs, instead of the stomach,” Tumi explains.
Kgomotso started therapy at the Far East Rand Hospital.
“I remember walking in and seeing different types of children, all different types of disabilities.
“I was shocked that there were so many people with different types of children, and that’s when I felt an acceptance: this is how my child is going to be.
“We joined in the therapies, but Kgomotso just kept developing complications. But, now it was easier because at least now I could speak to someone about it.”
Her speech therapist said feeding her orally was a hazard, and in 2015 she was fitted with a feeding tube.
At this stage, Tumi heard about Malamulele Onward, an organisation working to improve the quality of life of children with CP and their families.
Established in 2006, Malamulele Onward provides rehabilitation services to children affected by CP in remote and rural areas. It also provides training to support caregivers and parents.
“I remember feeling very happy. At Malamulele Onward, I’m getting the right tools to take care of my child.
“I learnt that there is no specific ‘therapy time’ in our lives. CP is a way of life. We don’t call our exercises ‘exercises’. It’s about constantly positioning and supporting your child, making sure they are well supported when lying down or sitting or standing. CP will always be there.
“But we can make our children’s lives better with our knowledge.”
Following three weeks of training at Malamulele Onward, Tumi is now a trainer and qualified peer supporter, a parent-to-parent caregiver working in the hospital environment.
Malamulele Onward has 21 peer supporters working in 15 hospitals.
Tumi regularly visits and shares her knowledge with other families affected by CP. She’s also sponsored to work at Tambo Memorial Hospital in Boksburg once a week.
She says Malamulele Onward is aware that it’s much easier for a parent to hear information about their child from someone who knows what’s it’s like from personal experience.
“Sometimes the therapists don’t have children or don’t understand CP as well as a committed parent or caregiver does. So let us teach one another,” she adds.
Ruth Mashe, who’s originally from Zimbabwe but now lives in Joburg, is one of the mothers who benefitted from Tumi’s shared-on knowledge.
Ruth is a mother to seven-year-old Tatenda, the surviving twin in an undiagnosed twin pregnancy. Ruth survived a harrowing first year with her baby, who cried nonstop. She even contemplated suicide.
“I was helpless, I had no support, and I was not working,” she recalls.
Only when Tatenda was about a year old was he diagnosed with CP at Charlotte Maxeke Hospital.
“I met an amazing therapist, who explained everything to me.
“I started attending Manamulele Onward in 2014. Since I was unemployed, I would get called to bring Tatenda whenever therapists had course training in order to practise their skills on him. I learnt too. I did carer-to-carer training to teach others how to look after people with CP.
“I don’t have a sponsor yet, but I go to Charlotte Maxeke to help teach other parents whenever I can,” the devoted mom explains.
“I went on to complete Manamulele Onward’s appropriate paper technology course. I have made a chair – out of cardboard! – that Tatenda uses.” (See picture of the chair on this page.)
Dr Gillian Saloojee is a physiotherapist who spent years working in the government healthcare sector before her PhD led her to the Malamulele Hospital in Limpopo, where she and a team of therapists spent five eye-opening days providing training and therapy to braindamaged children and their caregivers. The knock-on impact of just a small investment from therapists was inspiring to Gillian.
“We have witnessed the devastating consequences experienced by children and families with little or no access to therapy and supportive equipment.
We’ve also seen what can be achieved by children with CP, and by their parents, given the right conditions,” Gillian says.
She says with few sources of support, parents and caregivers of children with CP in rural areas are often isolated and don’t know about simple interventions that can make a meaningful difference to their lives and that of their children. Most rural therapists also lack appropriate training and experience in working with children with CP.
“Parents need to know two important things; one: it’s not my fault my baby has CP, and two: there are others like me,” says Gillian.
She adds that she would like to see an official, government-regulated qualification, with appropriate training and accreditation, being created, so that caregivers working with children with disabilities, such as CP, can develop career paths and have better employment opportunities.
Tumi and Kgomotso Matlou (left), Ruth and Tatenda Mashe (below) and Zingce Zibonele (opposite page) have all benefitted from Malamulele Onward’s cerebral palsy support.