Nuku’s Story

Every 2.5 minute a baby with cleft lip/palate is born somewhere in the world, making it one of the most common birth defects worldwide. Cleft babies in developed countries typically have their cleft repaired soon after birth and benefit from a comprehensive cleft care package that includes a series of surgeries as well as dental treatment and speech therapy.

For the more than 170,000 cleft babies born every year in the developing world, however, such treatment is far from given. Where cleft treatment is available, it is often too costly for a family to afford. While poverty is the most important factor preventing cleft babies in developing countries from receiving the necessary treatment, cultural and societal preconceptions about disfigurement also play a role.

In some communities, a baby born with cleft is considered cursed and rejected by its family and community. Children with an un-repaired cleft are often stigmatised and hidden away out of shame. Sometimes the mother of a cleft affected child is accused of having done something wrong for her child to be born with a cleft. Prejudice, superstition and cultural myths die hard, which is why a recent feature film by Ghanaian filmmaker Priscilla Anany is so important. images

‘Children of the Mountain’ is a story about Essuman, a Ghanaian woman who gives birth to a boy, Nuku, who not only has a cleft but is later diagnosed with cerebral palsy and Down’s syndrome.

Appalled by the baby’s appearance, his father, Edjah, rejects him, while Edjah’s mother blames Essuman for Nuku’s condition, accusing her and the baby of being cursed. Abandoned by Edjah and struggling to bond with her son, only the childless Asantweaa, Essuman’s best friend, is able to see the beauty in Nuku.

Desperate to find a cure for her son, and unable to afford the cleft operation a nurse tells her about, Essuman pays a fake healer who promises to heal Nuku. Realising she’s been duped when there’s no change in Nuku’s condition she visits a priest who takes her money and assaults her.

When nothing helps, Essuman begins to question her own actions. She seeks forgiveness from the woman who was Edjah’s girlfriend – and mother of his firstborn child – before Essuman ‘stole’ him. Anything to save herself and her son.

Not only is ‘Children of the Mountain’ an arresting film with strong performances from its all-Ghanaian cast, but it also shines a much-needed light on societal attitudes towards children with disfigurement and disability. Although Essuman and Nuku are fictional characters, their story mirrors the lives of many cleft-affected children in Ghana and elsewhere.

Had this been a Hollywood film, the part of Nuku would surely have been played by an able-bodied child made to look cleft affected with the help of computer-generated imagery or prosthetics. Anany, however, chose a Ghanaian child with an untreated cleft and Down’s syndrome to play the part of Nuku in order to make the film as realistic as possible. Once shooting was complete, the child received reconstructive surgery through the same Ghanaian-based charity that had helped Anany connect with mothers of cleft children.

Although I was already familiar with some of the issues raised in the film, it wasn’t until I watched ‘Children of the Mountain’ that I recognised the role that gender inequality plays in perpetuating the stigma and discrimination against children with disfigurement and disability in developing countries. For the burden of caring for a child such as Nuku rests entirely on the mother who at the same time is criticised and even rejected by her family and community, and indeed, the father of her child, for giving birth to an ‘imperfect’ baby.

The final message of Anany’s film is simple and yet so profound: “Sister, must I tell you? You did not impair your child.”

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