Every three minutes, a child with a cleft lip or cleft palate is born somewhere in the world. While surgery can repair this, Kholofelo Mphahlele argues that the real measure of success is a culmination of a very long journey that plays out in classrooms, on playgrounds, when photographs are taken, and within communities and workplaces.
For many families, the day a child receives cleft surgery to repair the lip, palate or gum is a milestone worth celebrating.
After months, and sometimes years of waiting, particularly for families who rely on South Africa's public healthcare system, parents finally see the physical gap repaired.
In my line of work at SECTION27 (a public interest law centre), I have seen firsthand how distraught families break down because they can't access healthcare services. In some cases, we don't have the means to assist, such as in the case of one client who approached us for help in accessing surgery.
Follow us on WhatsApp | LinkedIn for the latest headlines
Nevertheless, I remember speaking to parents shortly after they managed to access surgery for their child. They told me that, for the first time, they had stopped worrying about their child's physical appearance. Their concerns had shifted though to wondering whether their child would one day think they were different, how they would perceive themselves as they grew older, and how they would explain why they were born with a cleft condition.
That conversation has stayed with me because it revealed something profound. Too often, cleft conditions are viewed through a cosmetic lens. Once surgery is complete, we assume the problem has been solved.
In South Africa, the prevalence of cleft lip and palate is estimated at 0.3 cases for every 1 000 babies born alive but it differs dramatically between provinces, with 0.1/1 000 in the Eastern and Northern Cape to 1.2/1 000 in the Free State. Approximately 9 out of 10 people in low-income countries do not have access to the basic surgical care needed to treat the condition.
Yet surgery is only one milestone in a much longer journey for children born with a cleft lip and palate or other craniofacial conditions whose struggle also includes feeding difficulties, speech and hearing challenges, dental and orthodontic care, emotional wellbeing and social acceptance.
Thus, closing the gap surgically is only the beginning. The journey that follows is about ensuring every child has the support to grow with confidence and dignity, and has the opportunity to realise their full potential. Surgery cannot teach a child to pronounce their own name with confidence. It cannot guarantee they will hear clearly in a classroom or ensure they smile without fear of being judged. That is why surgery, remarkable as it is, can never be the end of care.
What comprehensive care means
Many children require nutritional support during infancy, speech therapy, hearing assessments, dental and orthodontic treatment, psychosocial support, and ongoing follow-up with specialised healthcare professionals. These services help ensure that children are not merely treated, but are given the opportunity to communicate confidently, succeed at school, build meaningful relationships and participate fully in society.
However, for a child, comprehensive care is not experienced as a collection of healthcare services. It is experienced as answering a question in class without embarrassment, laughing freely with friends, eating comfortably with family, and growing into adulthood believing they belong.
Across South Africa, healthcare professionals, public hospitals and civil society organisations work tirelessly to support children born with cleft and craniofacial conditions present at birth that affect the structure and function of a baby's head and face. While their dedication has made a real impact on countless lives, their work also exposes a deeper problem.
Comprehensive cleft care should not depend on where a child is born, whether specialist services exist nearby, or whether another organisation is able to step in where the healthcare system falls short. Partnerships between government, healthcare professionals and civil society play an important role in expanding access to care, but they should strengthen and not merely substitute a healthcare system that consistently delivers comprehensive care to every child who needs it.
Healthcare should never depend on geography
A child born in Mthatha in rural Eastern Cape should have the same opportunity to thrive as a child born in Johannesburg in Gauteng. Families should not have to travel hundreds of kilometres simply to access speech therapy, audiology or orthodontic services that are essential to a child's recovery.
South Africa's Constitution provides a clear framework for understanding why this matters. Section 27 guarantees everyone the right of access to healthcare services, while section 28 provides that a child's best interests are of paramount importance in every matter concerning them.
For children born with cleft conditions, these constitutional commitments cannot end at the operating theatre through a single medical intervention. It requires rehabilitation, therapy and ongoing multidisciplinary support that responds to a child's changing needs as they grow. Meaningful access to healthcare must therefore include the continuity of care that enables children to eat, speak, hear, learn and participate fully in society.
The ongoing psychological, functional, and aesthetic challenges experienced by people with cleft lip and palate underscore the need for an individualised, lifelong, and multidisciplinary approach to managing the condition, argues @Kholo21. @SECTION27news https://t.co/v0UBznXN0I
-- Spotlight (@SpotlightNSP) September 13, 2024
The reality is that this remains an ongoing challenge for many families, particularly those living in under-resourced communities. Follow-up appointments often require travelling long distances. Access to speech therapy, audiology services, orthodontic care and specialised multidisciplinary teams remains uneven across provinces. Transport costs, time away from work and financial constraints become barriers to accessing the very care that determines whether surgery achieves its full potential. There is some evidence that, even when patients reach specialised care centres, not all of the needed types of support is always available.
Sign up for free AllAfrica Newsletters
Get the latest in African news delivered straight to your inbox
When continuity of care becomes inaccessible, inequality remains firmly in place despite surgery. Thus, achieving comprehensive cleft care requires sustained investment in multidisciplinary healthcare services across all provinces so that no child's future is determined by where they are born.
As South Africa strives towards equitable access to healthcare, the need for comprehensive cleft care reminds us that change cannot be measured only by the number of successful operations. In fact, in cases where surgeries are carried out when children are still young, the real measure of success comes years later. It is measured in classrooms where children confidently raise their hands to answer questions. On playgrounds where they laugh freely with friends. In family photographs where they smile without hesitation. Eventually, it is measured in workplaces and communities where they participate fully without carrying the burden of preventable disadvantage.
These are not extraordinary hopes for the likes of the parents who I spoke to, but they are the hopes every parent has for their child. The goal has never simply been to repair a cleft; the goal has always been to ensure that every child could thrive.
*Mphahlele is a Paralegal at SECTION27.
Note: Spotlight is published by SECTION27 but is editorially independent. The views expressed in this opinion piece are not necessarily shared by the Spotlight editors. Spotlight is committed to publishing a variety of views and facilitating informed discussion that deepens public understanding of health issues.
