When Rohit was born, his parents were horrified to see their baby’s face. In school, Rohit was the only child with a cleft lip. He was taunted and called names. But an anganwadi worker told his family about the Smile Train, which offered free surgical treatment for cleft lip. Rohit successfully underwent cleft repair surgery and returned home with a normal face.
Unfortunately, not all the 35,000 babies born annually in India with a cleft defect are as lucky as Rohit. More than 50 per cent do not receive any treatment because they do not know that a cleft defect can be fully corrected or they are too poor to travel to a hospital.
A cleft occurs when certain midline soft tissues do not fuse together during the development of the foetus. Clefts can involve the lip, the roof of the mouth, and the soft tissue in the back of the mouth. While the baby is growing in the womb, parts of his skull, face and head gradually grow together. If these areas do not join up completely, the baby may be born with a cleft lip or palate.
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In India, cleft defects are as much a social and economic issue as they are medical. A majority of cleft births occur in rural India where poverty, illiteracy and misinformation are rampant and access to medical resources is scarce. Widespread socio-cultural beliefs add to the problem. Many children afflicted with clefts, especially girls, are killed at birth or abandoned. Orphanages are full of children with cleft defects. Even when they are allowed to live, their families are ashamed of them, other children taunt them and most schools won’t accept them. If they manage to get some basic education, they cannot find jobs, get married or join mainstream society. Though ‘normal’ in every other sense, children born with cleft defects are condemned to grow up as social outcasts and objects of ridicule because of the facial deformity and speech impediment.
Cleft lips come in a broad range of severity and disfigurement. Some can be as slight as a notch in the red part of the upper lip. Others manifest as a severe cleft lip with the total separation of the lip all the way up into the nose. Cleft lips can involve a single cleft (unilateral cleft), or a double cleft (bilateral cleft). They invariably occur on the upper lip.
A cleft palate is when the roof of a baby’s mouth has not joined fully, leaving a gap. It can happen with or without a cleft lip. Some babies have only a small gap in the palate, but in severe cases the roof of the mouth is almost completely separated. Cleft palates can range from a tiny hole at the back and in the roof of the mouth, to a major cavity that runs all the way from the front to the back of the mouth.
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While the exact cause is not known, a number of contributing factors have been identified: a genetic predisposition as well as environmental factors such as drug and alcohol use, smoking, maternal illness, infections and lack of vitamin B and folic acid. A woman is at a higher risk for having a baby with a cleft if she is a teenager or over 35 years old and is exposed to teratogens, which include medications, chemicals, infectious diseases and environmental agents that can disrupt the normal development of a foetus.
Untreated clefts lead to a host of problems — both physical and psychological — that include poor speech, impaired hearing, regurgitation of food and liquids through the nose, frequent upper respiratory tract infections, depression, low self-esteem and dental and orthodontic problems.
A person with an untreated cleft has an expected life span that’s statistically 14 years less than the national average. Cleft of the palate causes poor speech development. These children may take longer to talk. When they do, they may talk slower than most children, may have a nasal intonation, and may find it hard to pronounce certain words. If a child with a cleft palate is operated late, speech therapy is often needed to help eliminate any speech impediments.
Most clefts can be completely corrected with a simple surgical procedure that could take as little as 45 minutes and cost Rs.12,000. Few procedures can change a child’s life as quickly and as dramatically as cleft surgery. Smile Train not only makes quality cleft lip and palate surgery available across India, it provides it completely free of cost to anyone who needs it. To ensure safety and efficacy of the procedures, doctors and healthcare professionals in India are trained and educated in the latest in cleft surgery and related care. Smile Train works only with local doctors and hospitals in India, helping them treat children in their own communities.