In Cape Town, a collaborative approach involving public hospitals and an NGO is helping high-risk babies like premature twins Mariam and Asiyah receive timely interventions for cerebral palsy. This model emphasizes the critical first 1,000 days of life to optimize development amid South Africa's overburdened health system. Experts highlight early detection and family support as key to better outcomes.
South Africa's health department is overhauling its framework for disability services, raising questions about standardized care for cerebral palsy—a motor disorder affecting two to three babies per 1,000 globally, with higher rates in low- to middle-income countries like South Africa. In Cape Town, a integrated system demonstrates effective early intervention.
Sadiyah Amod's twins, Mariam and Asiyah, were born prematurely at 29 weeks in June 2023 at Groote Schuur Hospital, each weighing just over 1kg after Amod developed preeclampsia. Discharged after three months in incubation, the family faced uncertainty about developmental risks, particularly for Mariam. Support began at Mowbray Maternity Hospital's infant clinic, continued with the Bhabhisana Baby Project NGO, and from nine months, the Cerebral Palsy Clinic at Red Cross War Memorial Children’s Hospital.
Dr Clare Thompson, a neurodevelopmental medical officer at Mowbray, describes a 'world-class integrated system' for risk detection, noting only one in five high-risk infants develop long-term problems. Mariam was diagnosed with hemiplegia, a unilateral form of cerebral palsy. Dr Kirsty Donald, head of Developmental Paediatrics at Red Cross, explains it as an early-onset brain lesion impairing motor skills, with interventions like constraining the dominant side to encourage use of the affected limb.
Bhabhisana, founded 10 years ago by physiotherapist Ann Bullen and speech pathologist Faizah Toefy, bridges gaps in the public system by providing therapy before formal diagnosis. Bullen stresses that 'waiting is not an option in the first 1,000 days,' when brain neuroplasticity peaks. Amod learned techniques to integrate therapy into daily routines, including positioning and play to raise awareness of Mariam's left side. 'You cry, and they just listen; they make you feel better,' Amod says of the emotional support.
Mariam now uses an Ankle-Foot-Orthosis and Botox injections, walking on her knees but progressing toward standing. Another family, Kaylee Erasmus and daughter Jemma with spastic quadriplegia, benefited similarly from age six months, receiving a buggy and ongoing care despite multiple hospital stays.
The national framework, under review since 2015, ensures neonatal screening and referrals, but Donald emphasizes partnerships at Red Cross, including with the Western Cape Cerebral Palsy Association, create a 'one-stop shop' for families. Early parental advocacy remains crucial in the public sector.