Despite being one of the most common and fully treatable birth defects, thousands of South African children born with clubfoot are slipping through the health system, often with lifelong consequences.
Disability remains profoundly undercounted in SA, with estimates suggesting up to 90% of children with disabilities are not captured in official data.
Those most affected are children in under-resourced and rural communities, where access to early diagnosis and treatment is limited or non-existent.
Clubfoot, a congenital deformity in which one or both feet turn inward and downward, affects between 1.18 and 1.2 per 1,000 live births globally. Roughly 176,000 children are born with the condition worldwide each year, and at least 2,000 of them are South African.
However, more than half of the children affected in the country never receive treatment, despite the condition being fully correctable if identified early.
“Children with disabilities remain underserved and largely invisible in South Africa,” said Karen Mara-Moss, CEO of Steps, an organisation supporting clubfoot treatment in under-resourced communities.
“There is a gaping hole in the country’s measurement and reporting on disability, and children are paying the price,” she said.
Mara-Moss said South Africa’s lack of accurate disability data means health planners and policymakers do not know how many children need help or where they are.
“It’s not because treatment doesn’t work, or because parents don’t want help. It’s because the system doesn’t know where the clubfoot cases are,” she said.
“The result is devastating. Children develop lifelong, preventable disabilities that affect mobility, confidence and future opportunities while placing enormous emotional and financial strain on their families,” Mara-Moss said.
Treatable when caught early
A South African study on the epidemiology and treatment outcomes of clubfoot confirms the Ponseti method remains the global gold standard. It involves weekly manipulation and casting of the infant’s foot to gradually correct its position.
“Ponseti treatment should begin as soon as possible after birth when the bones are cartilaginous and soft tissues respond well to stretching,” the study noted.
“Late presentation leads to increasing difficulty due to ossified bones and contracted fibrotic soft tissue.”
‘No national surveillance’
Mara-Moss warned that childhood disability remains a neglected part of the health landscape and the absence of a national surveillance system is a major barrier.
“Data suggests one in 10 children in Eastern and Southern Africa lives with functional difficulties. However, we cannot rely on this figure,” she said.
“Our public health system has no effective national surveillance system for registering birth defects and disability-related conditions.”
Without reliable, quantifiable data, she said, policymakers continue to make decisions “in the dark”.
“We cannot allocate funding appropriately, plan services or design interventions that meaningfully change people’s lives, especially when conditions such as clubfoot are completely treatable,” Mara-Moss said.
She said without a national disability surveillance system, South Africa cannot:
- plan early childhood intervention needs
- identify areas with the highest burden
- allocate budgets fairly
- deploy specialists effectively
- track treatment outcomes
- understand long-term social and economic impacts.
“We are essentially trying to drive national health planning with the lights off and the doors closed to the realities on the ground,” she said.
‘Every child deserves the chance to reach their full potential’
As the country prepares to mark International Day of Persons with Disabilities next week, Mara-Moss said the need is urgent.
“Every child deserves the chance to reach their full potential, and every family deserves access to care that is close, reliable and well-resourced,” she said.
“South Africa has the skills, commitment and practical foundations to build the disability surveillance system the country urgently needs. What’s missing is the will to prioritise disabled children.”
TimesLIVE
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