It was after school when I visited Prince at the Felicitas School for the mentally and physically handicapped. This is where 12 year-old Prince Khanyi of Tsakane on Gauteng’s East Rand spends half of his day. The boy has cerebral palsy, the result of negligence of health workers at the East Rand’s Pholosong Hospital. When Prince was born 12 years ago, hospital staff failed to pick up that he was in a footling breech position, meaning that he was facing feet first instead of head first in his mother’s womb.
In this instance, a caesarean section is the appropriate means of child-birthing. His mother, Martha, says staff even failed to inform her that something was abnormal with her son after she gave birth. It was only when Prince was 10 months-old that she noticed that the child was not developing normally.
‘I observed him as he started growing. He never used to cry. I would often just see tears in his eyes or rolling down his face. When he was three or four months (old), I tried to sit him up and he wouldn’t sit. I couldn’t breastfeed him because he couldn’t suck. I used a bottle feed. His body was too limp, says Prince’s mother, Martha’.
Cerebral palsy is a condition that limits the body’s ability to function on its own because it affects the brain and how it communicates with the body. A child will not be able to eat, talk and do what children would normally do. This description would best describe Prince.
It was through the advice of a pharmacist on Prince’s condition that Martha took her child back to the hospital that she learned that her child has cerebral palsy.
‘When we arrived at the hospital they asked me: ‘what’s the matter… is Prince sick’? Prince was now 10 months-old. I told them he was not sick, but I was referred by a pharmacist who said I should ask the staff what’s wrong with my baby because he cannot sit. That’s when they told us that he is brain-damaged. They told me he won’t be able to sit or walk and he has to come for physio at the hospital because his muscles will become stiff as he grows older’, says Martha.
Prince received physiotherapy sessions at the hospital up until 2005 when he began his schooling at Felicitas School for the mentally and physically challenged.
After his admission at Felicitas, his mother began to see some improvement in the child. Before attending here, Prince could hardly articulate himself. According to his speech therapist, Sima Parsot, he has made great progress.
‘Prince cannot speak, but he now has a device to help him communicate and he is amazing with it. He understands everything. The device is called an alternative communication device. Prince grasped the concept immediately. He knows exactly what to say when’, she says.
The audio device uses pictures for communication. Learners point at these pictures in relation to what they want to say. Parsot says the device brought out the humour in Prince.
‘One day my computer was giving me trouble and on his device he pressed ‘you need help’ and I said: ‘Yes, I do. I’ll call the Occupational therapist’ and he said, ‘that’s very funny. Why can’t you fix the problem?’ I called her and she couldn’t figure it out. I then asked him to thank the teacher for helping us and he looked at his board and pressed the picture ‘I don’t want to’, and I asked: ‘Why’? He said: ‘Well, she couldn’t help us’. This device has opened a whole new world for him’.
For his physical needs, Prince sees a physician once every two weeks. Physiotherapist, Chitra Maharajan, says she is currently training him to use his electronic wheel-chair on his own.
‘He received a custom-made wheel-chair. It is a motorised chair. I’m training him to move the wheel-chair by moving the joystick in the electric chair, and he is doing well’.
Maharajan says although Prince is making progress, he still has many limitations.
‘The primary disability is that he can’t control his movements. For example, if he wants to lift his hand, he can’t control himself and what he wants to do. Another limitation is that he has some contractions in his legs and has low muscle and body tone’.
Prince needs great assistance with activities of his daily living, such as dressing and feeding himself. Head of the Therapy Department at the school, Daleen Visser, says their greatest aim is to get him to be independent in his motorised wheel-chair.
‘Our main aim now is get him more independent in his wheel-chair, so he can get around the school. The other kids in motorised wheel-chairs can leave class and go to the tuck-shop on their own, whereas he needs somebody to push him’, says Visser.
Prince has shown baby step improvements. Therapists say he will continue making these small improvements, but that his condition will not dramatically change.