‘This is how we do it’: 30 years of caring for a son with cerebral palsy

Cerebral palsy can have many causes, but in South Africa, birth asphyxia — when a baby doesn’t get enough oxygen around birth — is a major one.

Some cases can be prevented when problems during labour are spotted and treated in time.

We don’t know exactly how many South Africans have cerebral palsy.

Researchers and advocates say a national register could help the country plan services — and see where prevention is failing.

For families in rural areas, poverty can make caring for someone with cerebral palsy much harder: transport is expensive, clinics may not have the right medicines and even a suitable toilet can be out of reach.

At a rural North West hospital, a programme once taught parents how to care for children with disabilities at home.

The programme has since been cut back — but one mother is still passing on what she learnt 30 years ago.

In today’s newsletter , Tanya Pampalone introduces us to a son, a mom and life with cerebral palsy.

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Cerebral palsy often announces itself in the space where a milestone should be.

For Keneilwe Dikoma, it was when she took her baby for his six-month check-up at a clinic near their home in Lotlhakane, a village of scattered homesteads and open veld in North West.

By then, Lorato should have had the physical skills healthcare workers look for to make sure babies are on track — rolling over, pushing up with straight arms and sitting.

Dikoma was a teenager at the time, just 16, and it was her first child.

He was a peaceful baby and smiled a lot from early on.