A GNA Feature by Regina Benneh
Sunyani (Bono), Aug. 28, GNA – Every three minutes, a child is born with a cleft lip or palate somewhere in the world.
Cleft lip and palate are congenital conditions in which parts of the face and mouth fail to join completely during pregnancy. A cleft lip appears as a split in the upper lip, while a cleft palate involves an opening in the roof of the mouth. Experts estimate that the condition occurs in approximately one in every 700 births globally.
Smile Train
Smile Train, a cleft-focused non-governmental organisation, is empowering local medical professionals with training, funding and resources to provide free cleft surgery and comprehensive care to children globally.
Through its “teach a person to fish” model, the organisation has supported more than two million free cleft surgeries in over 75 countries.
The organisation promotes a sustainable and scalable global health model for cleft treatment, improving children’s ability to eat, breathe and speak and helping them thrive.
Cleft specialists describe the condition as a treatable congenital difference, with surgical repair restoring function and appearance for most children.
Treatment
According to Dr. Robert Larmie, Senior Specialist and Head of Oral and Maxillofacial Surgery at the Cleft Center of the Komfo Anokye Teaching Hospital (KATH), treatment involves surgery, dental care, speech therapy and nutritional support.
“In fact, early intervention gives children stronger health outcomes,” he said.
Cultural beliefs and stigma
Despite the medical explanation, some communities continue to associate clefts with spirituality, curses, and witchcraft. Others believe the condition results from a pregnant woman looking at forbidden objects.
Such beliefs contribute to stigma and delay treatment.
Many children with clefts receive hurtful nicknames because of their facial appearance, while some community members distance themselves from affected families.
In public transport, markets and churches, mothers with children born with clefts may endure humiliating stares and comments. Because the condition is visible from birth, it can lead to social isolation, particularly in communities where misinformation spreads faster than medical facts.
Countering myths with medical facts
Experts say there is no medical basis for linking clefts to witchcraft or curses, explaining that the conditions occur during fetal development and can result from genetic and environmental factors during pregnancy.
Dr Larmie called for intensified public and community education to dispel myths and misconceptions, stressing that “clefts are treatable through surgery.”
He noted that attributing clefts to spirituality could delay treatment and increase stigma and discrimination.
He explained that the KATH Cleft Center “exists to bring hope to mothers and children,” observing that mothers often arrive at the clinic experiencing frustration, emotional and psychological stress.
However, after successful surgery, he said, mothers often displayed renewed happiness and confidence, particularly after seeing other children whose clefts had been repaired.
Extreme stigma and its consequences
The stigma associated with clefts can have severe consequences for affected children and their families.
A medical practitioner cited a case in which a parent of twins born with clefts killed one child and attempted to kill the other, but the second child was saved through timely intervention.
Mr Kwaku Ahenkra and Madam Akuah Ella, a couple from Côte d’Ivoire, also recounted how they were advised to kill their baby girl after she was born with a cleft two months earlier.
Having lost hope, the family travelled with the baby from Côte d’Ivoire to Ghana and settled in Dormaa-Ahenkro.
Mr Ahenkra said after seeing a cleft awareness advertisement on television, they travelled to the KATH Cleft Center for assistance, where their daughter received treatment and her condition was repaired.
Another mother from the Western Region said specialists encouraged her that her baby’s condition was treatable. She contacted a relative in Kumasi and took the child to the KATH Cleft Center, where the child is currently undergoing surgery.
Mothers’ emotions and societal blame
Many mothers of children with clefts face blame from families and communities, which sometimes question their behaviour, diet or spirituality during pregnancy.
In some cases, marriages collapse after the birth of a child with a cleft, with women often bearing the blame while their male partners escape condemnation.
Some mothers also experience isolation from social, religious, community, and family gatherings, resulting in anxiety, depression, shame, and guilt.
Breastfeeding and financial burden
Breastfeeding can be difficult for some mothers because the opening in the lip or palate may make sucking challenging. Some have to use specially made feeding bottles, which can extend feeding times.
Families may also travel long distances to health facilities and spend heavily on medication and other care. The financial burden can force some mothers to stop working to provide full-time care for their children.
Challenges faced by children
Children with unrepaired clefts may experience feeding difficulties from birth, as breast milk or formula can leak through the nose. Poor nutrition can result in slow weight gain and increase the risk of malnutrition, dehydration, and infections.
Ear infections may occur because the condition can affect the tubes that drain the ears and, in some cases, lead to hearing impairment.
Speech development may also be affected, while dental problems can arise when teeth emerge around the cleft area.
At school, some children experience stigma, discrimination and social exclusion. Educators say affected children may participate less in class and group activities and may struggle to make friends because of their appearance and reduced self-esteem.
Adolescents with unrepaired clefts may experience low self-esteem and social withdrawal. Although surgery can improve physical function, social scars may remain where communities continue to focus on the child’s former appearance.
Voices from survivors
A worker at the KATH Cleft Center, who shared her personal experience, said people sometimes viewed her negatively when she spoke, turning to look at her when she contributed ideas or made decisions.
She said some people rejected her decisions but accepted similar ideas from others because of misconceptions about people born with clefts.
“The constant rejection and judgment is too much and caused me to have many thoughts going through my mind,” she said.
Her experience reflects the psychological toll that stigma and discrimination can have on children and adults born with clefts, even after surgical repair.
Economic toll on families
The economic burden of cleft treatment can create severe hardship for families.
Some parents stop working for extended periods to care for children undergoing treatment, while transportation, accommodation, feeding and post-surgical care drain family resources.
Specialists say a complete cleft treatment journey involving multiple surgeries and years of therapy could cost thousands of Ghana cedis, which many families cannot afford.
Smile Train’s intervention
Smile Train supports families by providing breast milk supplements to mothers and food supplements to older children to reduce the burden during treatment.
The organisation also sometimes supports transportation for families travelling for surgery.
With its intervention, cleft surgeries performed at the KATH Cleft Center are provided free of charge.
Treatment delays
Awareness of surgical options remains limited in many communities, particularly rural areas, where knowledge about cleft repair is low.
Treatment delays are often linked to cultural and traditional beliefs that associate clefts with curses or witchcraft. Other barriers include the cost of surgery, transportation, and post-operative care.
Children who receive surgery after two years may also face greater speech challenges.
Post-surgical care requires follow-up for speech therapy and dental treatment, but some families discontinue visits because of cost and distance.
Societal support can change lives
Support from society can help reduce stigma, discrimination, and social exclusion faced by mothers and children with clefts.
Creating a protective and accepting environment can build the confidence of children born with clefts and help change negative community attitudes towards them.
Medical response and public education
Comprehensive cleft care includes surgery, speech therapy, dental care, and psychological support.
Specialists recommend that the first lip repair be performed between three and six months of age, while palate repair usually takes place between nine and 18 months. Speech therapy begins after palate surgery.
Dentists and orthodontists manage teeth alignment as children grow, while psychologists provide counselling to children and parents to address emotional stress, parental guilt, and misinformation following diagnosis.
Media advocacy
Auntie Emily Manjeru, Senior Manager, PR and Communications Africa at Smile Train, called for intensified media advocacy against stigma and discrimination.
“It wasn’t the fault of the child to be born that way because cleft often occurs due to genetics and environmental problems,” she said, adding that treatment could help free children from stigma.
Auntie Manjeru said the organisation supported the cause to help children participate fully in society.
She noted that children with repaired clefts could attend school, speak clearly, and participate fully in society when they received timely care and acceptance.
Conclusion
Mothers raising children with clefts demonstrate resilience when communities provide support instead of stigma.
Reducing stigma requires accurate health information, accessible and affordable treatment, and community acceptance.
The condition may affect the face, but stigma can affect the entire family. Families can thrive when society replaces blame with understanding.
All children, regardless of their physical formation, deserve care, acceptance and opportunities to fulfil their potential. For children born with clefts to thrive, medical care and social support must work together.
GNA
Edited by Dennis Peprah/Audrey Dekalu
Writer:Regina Benneh
[email protected]