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-pu
The report indicates that 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.
It further notes that a yet-to-be-published study by the National Cleft Care Centre (NCCC) has indicated 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.
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,” stated 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.
