While they deal with societal stigma and rejection, parents and guardians of children living with cleft are enduring constant economic constraints as they seek care.A yet-to-be-published study by the National Cleft Care Centre (NCCC) has revealed that parents spend at least twenty-five per cent (25%) of their annual income on transportation, feeding and other miscellaneous activities in their quest to seek free comprehensive care.A situation the centre describes as ‘catastrophic expenditure ’, which could throw many of them into abject poverty and prevent them from accessing holistic care for their wards. The recent study is adding to growing calls for the government to enrol cleft care onto the National Health Insurance Scheme to complement support from international organisations, empowering families with free comprehensive care.When Ama Akuamoah, a mother of two boys, gave birth to her three-month-old son living with cleft, she was distraught over where and how to care for him.The fear of social stigma from her neighbours and some relatives shied her away from seeking financial assistance for her second child.Although Akua’s husband was ready to support them, the wherewithal to seek urgent medical care for their child eluded them. Her husband, a driver, had not accrued enough to complement the proceeds she gets from her petty trading business.“I was worried after I gave birth to him about how we were going to seek medical care. It left me with days of thinking,” Akua noted. Midwives and other health professionals who took care of her during delivery assisted her to the National Cleft Care Centre (NCCC) at the Komfo Anokye Teaching Hospital.At the facility, Akua realised she was not alone. What are clefts?Orofacial clefts occur when babies’ lips or mouths do not form properly during pregnancy. These babies are born with an opening (cleft) in the upper lip or the roof of the mouth (the palate), or both. Clefts are one of the most common facial differences — 1 in 700 babies are born with a cleft lip and/or palate globally.An estimated 4.6 million people around the world live with untreated or inadequately treated orofacial clefts, primarily in low-resource settings.In Ghana, it is estimated that 1 in every 770 children is born with a cleft lip or palate, making it one of the most common congenital anomalies in the country. Additionally, it is reported that 406 children are born with clefts each year.“I don’t allow anyone to come home to come and look at him. I usually cover him with a cloth, ensuring that he is not exposed for people to see him,” said Akua, whose son lives with a complete cleft lip and palate.Beyond social stigma and ostracisation, clefts can also lead to difficulties in eating, breathing, and speaking.The condition poses a burden on the healthcare system and on caregivers.‘Catastrophic Expenditure’According to health experts, it would take a baby born with a cleft lip and/or palate at least 18 years to undergo comprehensive cleft care. This is a multidisciplinary, lifelong approach to treating cleft lip and palate, integrating surgery, medical, dental, speech, nutritional, and psychosocial support – all intended to ensure patients’ long-term, successful rehabilitation.All of this holistic medical care comes with varying costs to the patients and families.It costs a minimum of 5,000 cedis for only the surgical component of the comprehensive care. This is dependent on the type of surgical procedure needed for the patient. The surgery cost, coupled with other care components, presents financial constraints to many families.Director of the National Cleft Care Centre, Professor Solomon Obiri-Yeboah, says families spend at least 25 per cent of their annual income on transportation and feeding whenever they visit the care facility.This financial challenge he describes as a ‘catastrophic expenditure’, which could push families into poverty.Prof. Obiri-Yeboah explains that many families are forced to skip hospital reviews – a practice which is unhealthy for the care needed for their children with cleft.“There was an instance where we called a mother to come for surgery on her kid, but she said she was waiting for her husband to send money before she could travel to the centre. Those we are unable to call miss the opportunity to come for their care,” he said.Maxillofacial surgeon at the NCCC, Dr Robert Lamy Larmie, highlights how the lack of financial support could push families and children with cleft into social stigma and its accompanying misconceptions.“If these mothers and kids aren’t able to afford the surgery, they will be pushed back to the myth and misconceptions, and the baby will eventually be killed. These surgeries we might think are offering only surgical care, but it is saving lives,” Dr Larmie noted. Free comprehensive care at NCCCOn the morning Akua arrived at the centre within the precincts of Ghana’s second largest referral hospital, she heaved a sigh of relief after seeing many mothers with their children living with the cleft condition.Although she had a scintilla of joy in her, she was then again worried over where she would get money to pay for the medical bills. But little did she know the cost for her ward would be absorbed by the centre.Through the Smile Train organisation, a cleft nonprofit surgery initiative, many children and persons with cleft conditions have had comprehensive and safe cleft care. The organisation has since 2003 supported families with free corrective surgeries to restore the smiles of persons with cleft.In 2025, Smile Train commissioned its fully funded and first-ever national cleft care centre in Ghana. The ultramodern and one of the largest cleft care facilities in Africa is intended to put smiles, bring warmth and restore hope to mothers like Akua and families, lifting the burden of financial support for care.At the reception of the facility, Akua was only required to pay 35 cedis (~$3) for registration and other non-medical requirements.“I only paid between 35 cedis and 40 cedis at the reception,” she said.At the centre, Akua met a dozen mothers who had had their children undergo corrective surgeries since the establishment of the new facility.Her child and those of others are a few of the over two thousand persons who are benefiting from the Smile Train cleft care in Ghana.The $69-billion impact For twenty-five years of its existence, Smile Train has supported over 600,000 families with funding for costs related to accessing cleft care worldwide. In Africa, over thirty countries have and continue to benefit from this initiative, with over 2,293 primary surgeries conducted in Ghana since the cleft-focused organisation’s presence in 2003. These cleft surgeries have given patients around the world a combined 12 million years of their lives back. The economic impact report of Smile Train posits that over 17,563 years lost to disability have, since the introduction of the initiative in Ghana, been averted.Also, Smile Train has contributed a value of more than $69 billion over the past 25 years across the globe, with more than $38 million in investment in education and training grants to medical professionals.Senior Manager, Public Relations and Communications Africa for Smile Train, Emily Manjeru, says despite these impacts over the years, more concerted efforts are needed to bridge the existing gap for a more inclusive society.“We still have a lot of journeys to go. The economic impact is really about building solid surgical systems, resilient health systems that can then improve the quality of care and treatment for patients with clefts,” she said.Globally, 33 million people struggle with the financial cost of surgeries. The health experts in Ghana are advocating for the enrollment of cleft care onto the National Health Insurance Scheme.Cleft care on NHIS neededAlthough the country is fortunate to have the cost of cleft care and its complementary professional medical training catered for by international organisations like Smile Train, calls are building for their sustainability through the government.Cleft care is currently not integrated into Ghana’s health care system, prompting urgent calls for no child to be left out of the universal health coverage.Representatives at Ghana’s health ministry have hinted at plans to incorporate cleft into national health policies, but this is yet to see any fruition.Stakeholders, including the National Cleft Foundation, believe it’s about time the government considered absorbing certain components of the multi-disciplinary cleft care.Director of the National Cleft Care Centre, Professor Solomon Obiri-Yeboah, believes the National Health Insurance Scheme could take up the surgical component of the care so that other funds could be redirected to supporting auxiliary needs of patients.“We can direct the funds we get to support the transportation and other care needs of the patients to relieve the tensions they experience in seeking care,” he said. Every smile tells a story — of courage, of healing, of hope. But for too many, the cost of cleft care remains a barrier that dims that hope. By placing cleft treatment under the National Health Insurance Scheme, no child will be left behind because of financial hardship.This is not only about surgery — it’s about dignity, opportunity, and the right to a full, confident life.