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    South Africa: Waiting Is Not an Option in the First 1000 Days – How a Shared Approach in Cape Town Helps High-Risk Babies

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    South Africa’s health department is overhauling its framework for disability services. It prompts an important question: When it comes to Cerebral Palsy – a wide-ranging motor disorder with possible comorbidities – what could a standardised package of baby care look like, especially within an overburdened public health system? Spotlight explores a collaborative approach in Cape Town aimed at optimising development during the critical first 1 000 days of life.

    Sometimes, you need to be cruel to be kind.

    Sadiyah Amod embodies this in her quest to ensure her two-year-old daughter, Mariam, gets the best chance in life: this means tricking Mariam into using her left side, which she would otherwise neglect.

    Mariam and her twin sister Asiyah were born prematurely at 29 weeks via caesarean at Groote Schuur Hospital in June 2023, after Amod developed preeclampsia. Each weighed just over 1 kg. They spent three months incubated and tube-fed. Amod and her husband Tariq Ganey visited the hospital daily while also taking care of their two toddler boys.


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    The family “did not know what to expect” after being discharged. They were told both twins were at risk of developmental problems, with Mariam most at risk, but “that we would only know how as they grow”. Amod says she was in a dark place in the early days, “expecting the worst”.

    But the couple didn’t have to deal with the unknown alone. They received support from several neurodevelopmental specialists, first from the infant clinic at Mowbray Maternity Hospital then the Bhabhisana Baby Project (an NGO), and from nine months old, the Cerebral Palsy Clinic at Red Cross War Memorial Children’s Hospital, a tertiary centre of excellence providing specialised public paediatric services.

    ‘Most high-risk infants progress normally’

    For 30 years, neurodevelopmental medical officer Dr Clare Thompson has supported babies at the high-risk unit at Mowbray Maternity Hospital, which is where high-risk pregnancies and post-births from Maternity Obstetric Units (MOU’s) and Community Health Centres are referred. (Spotlight recently reported on how this referral system helped lead to a successful birth in a case where an infant grew outside his mother’s womb.)

    She describes a well-oiled and “world-class integrated system” for risk detection and monitoring in the public sector city services she operates in, as long as communication with parents is effective, and they understand what is at stake. Some miss appointments, often because they “do not have the means to attend”, she says.

    Thompson says only one in five high-risk infants at Mowbray develop long-term problems, with most progressing normally.

    Asiyah progressed smoothly and, though difficult to predict later learning outcomes, is on a regular developmental trajectory.

    Mariam, meanwhile, has been diagnosed with hemiplegia – a unilateral form of Cerebral Palsy which, as a broad classification, affects two to three babies per 1 000 globally, according to widely quoted prevalence statistics, with the incidence being higher in low-to middle-income countries compared to the Global North. (For more detail on cerebral palsy in South Africa, see Spotlight’s previous in-depth coverage of the condition here and here.)

    Dr Kirsty Donald is head of the Division of Developmental Paediatrics at Red Cross War Memorial Children’s Hospital, under which the Cerebral Palsy Clinic falls, and also deputy director of the University of Cape Town’s Neuroscience Institute. She says although a figure of up to 10 children per 1 000 has been reported in certain high-risk communities, there are no current accurate prevalence data for South Africa. “But we need to assume it to be higher than figures quoted in the Global North,” she says.

    There are multiple types and sub-types of Cerebral Palsy, which Donald defines as an early-onset non-progressive brain lesion, with varying degrees of motor issues that impair babies from developing skills in typical ways. “Without being able to move their limbs freely, children living with Cerebral Palsy have an extra barrier alongside developmental delays in learning,” she says.

    With hemiplegia, as in Mariam’s case, human instinct favours the side that works, says Donald. The aim is to support the child to learn to use her affected limb. Interventions may include constraining the dominant arm temporarily, training the child to use the weaker side, and possibly generating new neurological connections.

    Amod says she learned how to position, massage, feed, clothe, play with, and talk to Mariam, encouraging awareness of her left side. She has also educated her family on how best to handle her, with a core aim of Bhabhisana’s support being to help build therapy into daily routines back home.

    She says the emotional support from Bhabhisana helped her on her journey, easing the transition from the neonatal service to the state hospital service. “You cry, and they just listen; they make you feel better; they encourage you,” she says.

    Today, Mariam has “discovered” her left side and, although it is early days and there are no guarantees, is on the road to attending mainstream school and leading an independent life. “If you tell her ‘move your left leg’, she pulls it from underneath. Everything we do, we have to make her aware of it,” says Amod.

    To enable her to be flat-footed, Mariam has been fitted with an Ankle-Foot-Orthosis (AFO) at the Red Cross Hospital, where she was also given Botox injections to encourage left limb function. Her physiotherapy visits at the Cerebral Palsy Clinic are often combined with occupational therapy, speech therapy, and specialist consultations from hospital medical officers.

    Spotlight interviewed Amod at Bhabhisana, along Belgravia Road, Athlone, though Mariam is no longer receiving their services after being integrated into the state health system at Red Cross.

    Mariam frequently calls out “Mama”. She walks nimbly, but on her knees, as it is easier for her than standing because she is unable to put her left foot down flat without support.

    Accustomed to keeping pace with their older brothers, the curious twins dart around the room like fireflies, playfully distracting us from our interview.

    To coax Mariam to stand, then walk on both feet, veteran physiotherapist Ann Bullen gives Amod some tips. “Put her in a Hi-Tec ankle boot with her AFO. Place her in a corner where she has to stand and her access to the right is blocked – for example, between a wall and the bed. Then motivate her to sidestep to the left by placing her favourite toy or snack out of reach at the end of the bed.”

    Bullen is a wizard at tough love. Ten years ago, she and speech and language pathologist Faizah Toefy quit their jobs at the Red Cross Cerebral Palsy Clinic and co-founded Bhabhisana, loosely translated from Xhosa as “Let’s help each other fly”.

    The co-founders were driven to provide speech, occupational, and physiotherapy services to bridge gaps in the stretched public health system, where developmental delays and disabilities may go undetected, or babies are on a waiting list, or are high-risk but not yet diagnosed with Cerebral Palsy, which is a referral requirement for the Cerebral Palsy Clinic.

    Waiting is not an option in the first 1 000 days, when the brain’s neuroplasticity is at its peak, says Bullen.

    ‘Building new pathways’

    Explaining why the first 1 000 days are vital, Donald says the brain grows from infant to near-adult size in the first two years. “But it is also about connections and building new pathways, and those early years of life are critical for motor skills, for learning, for language, for sight, and hearing.”

    Bhabhisana’s approach identifies at-risk children early, possibly before official diagnosis, unlike the hospital system, which has limited capacity to do so. “Sometimes, once you know a problem exists, you’ve missed 10-12 months of therapy opportunity,” she says.

    There is no such thing as “too much” when it comes to a package of care. “There is a culture of partnerships [at Red Cross], looking for creative ways to add more to what is available, because there is never enough,” says Donald.

    The Cerebral Palsy Clinic has existed since the 1970s, working in partnership with the Western Cape Cerebral Palsy Association, which funds a group of part-time physiotherapists, occupational therapists, speech therapists, and a social worker to supplement specialist outpatient services at Red Cross, which, like Groote Schuur, is affiliated with UCT’s Faculty of Health Sciences.

    Donald describes it as “a complex but integrated system” that involves coordinating rehabilitation and specialist input so families experience a “one-stop shop” during clinic visits.

    The government has an overarching “Framework and Strategy for Disability and Rehabilitation Services in South Africa”, though it does not spell out specifics for babies with cerebral palsy. In response to queries, National Health Department spokesperson Foster Mohale confirmed that this framework, dated 2015-2020, is “available and still applicable,” though it is currently under review.

    Mohale says “comprehensive health services” are available in all facilities across the country. A “referral pathway” ensures that specialised services are accessible in the primary health care setting, with an outreach programme where necessary. “Neonatal screening is done from birth and during primary healthcare facility visits. Every high-risk neonate will be admitted to a neonatal ward and receive specialised care. Upon discharge, high-risk neonates are followed up in the same facility or down-referred to a lower level of care as standard practice,” he says.