Children who can’t smile – the cleft lip deformity
Doctors call it the “ignored problem” and semi-literate parents in India’s rural hinterland view it as a “curse of God”.
Megan Mylan’s documentary film “Smile Pinki”, the story of an eight-old girl with a cleft lip, may have won an Oscar, but for thousands of children living with the deformity, the battle is far from over.
Pinki’s story only came to light after the documentary portrayed how society ostracized the little girl in Rampur Dhabahi village in Uttar Pradesh.
One in 35,000 children in India is born with the deformity every year. An estimated one million cases of cleft lips are left untreated in India and doctors say it is one of the most serious birth defects.
The stigma and ignorance attached with it can push a child to depression.
In the late 80s, I knew an adult with an untreated cleft upper lip and palate who was chased around the neighbourhood by urchins chanting “the man who can’t smile”.
If his humiliation is proof of the plight of people with oral clefts in India, the trauma must be a hundred times more for children as young as five.
There are an estimated four million untreated clefts in the world. It affects people’s ability to eat or speak properly and most children suffer isolation and ridicule because of the deformity.
Officials of the global cleft charity ‘Smile Train’ say parents are known to abandon or even kill babies born with the congenital disorder.
“They think it’s a curse of God and they continue to live with it.”
After “Smile Pinki'”s success there is hope that international recognition of the work done by Indian surgeons will highlight the problem.
But ignorance about the condition, no access to treatment and illiteracy in the rural hinterland will continue to hinder efforts by medical and social workers in providing help to the children who need it, Kalra said.
“Even if we make a conservative estimate that one percent (of clefts) is reached, one percent of four million is 40,000 and that’s a huge number.”
“So 40,000 children can have their lives changed as a result of this Oscar.”
But will the film achieve the desired effect? How many will actually watch the documentary?