Smile-makers

A U.S.-based organistion runs a project in India to correct cleft lip and palate while the government is yet to see it as a disability. By Purnima S. Tripathi

WHEN Sonu was born two and a half years ago, there was no jubiliation in the family. Instead, the family was devastated. A healthy child otherwise, he had a cleft lip and palate. The defect made suckling difficult and that impaired the child's growth. Sonu became malnourished and was ill most of the time. His father, a petty shopkeeper, did not know whom to turn to for help until he spoke to a doctor in the neighbourhood, Dr. Umakant Gupta. The doctor advised him to take Sonu to the Maharaja Agrasen Hospital in West Delhi where the New York-based organisation, the Smile Train, conducts a project to provide free treatment to persons with the problem.

Now Sonu looks as normal as any other child. His cleft lip and palate has been corrected and he is undergoing speech therapy and other follow-up treatment under the supervision of Dr. Devansh, a plastic surgeon involved in the project.

Not everyone born with cleft lip and palate is as lucky as Sonu. Many such people remain untreated for life, forced to live miserable lives. One in every 800 children is born with cleft lip and palate. More than 35,000 children are born in India every year with the problem, but in most cases it is not corrected, lack of awareness and the inhibiting cost of the treatment being the reasons. In India, more than 10 lakh adults suffer from the defect, which could have been treated if the government had recognised it as a health problem.

The majority of cases are "treatable", but the cost of treatment is prohibitive, ranging from Rs.25,000 to Rs.1 lakh, depending upon the severity of the problem. Most of the people with cleft lip and palate belong to families living below the poverty line, and thus the cost of the surgery is a deterrent.

A study of children born with cleft lip and palate, conducted by the Tata Institute of Social Sciences for Impact India Foundation, an organisation that focusses on the reduction and reversal of avoidable disabilities, is an eye-opener. The study, which was sponsored by Smile Train, found that three-fourths of the cleft lip and palate cases were in families living below the poverty line, with an average monthly income being less than Rs.1,000 and comprise mostly of farmers, daily wage earners and petty business owners. Which meant that even if the families were aware of treatment, they could not afford it. Such children rarely went to school, or if they did they dropped out at an early age because of the stigma attached to their problem.

This explains the finding that nearly one-third of the people with cleft lip and palate are illiterate and only a quarter of them have education up to the secondary level. The study also found that most of these people had a poor life expectancy, about 40 years, and an overwhelming majority (over 66 per cent) of them remained single.

"It is a pity that the government does not pay any attention to people with cleft lip and palate because this does not lead to mortality. Children born with the problem don't die immediately. Hence surgeons also tend to ignore this problem. Besides, cleft is not even recognised as a disability under the Disability Act of India. Hence there is no programme for such people whereas the studies have indicated the need for such a programme," said Satish Kalra, India director of Smile Train.

According to Kalra, the problem is not typical of India. In most countries it has not come to be recognised as a disability. That is precisely the reason why Smile Train was born, he said. "We realised it was an affliction that could be treated, and the project was launched worldwide in 1999. In India it was launched in 2000 and has since helped over 50,000 persons. Over 1.4 lakh people have been treated all over the world so far."

The Smile Train project is running in 70 centres all over the country at various hospitals screened and selected by its medical advisory board. Even the surgeons attached to the project are screened by a board, Kalra said. "The quality of treatment is important for the success of cleft surgery. Hence we have to adhere to strict guidelines. The credibility of the hospitals and of the surgeons has to be impeccable, of the top order. Only then can they associate themselves with this project," he said.

The project takes care of the entire gamut of the treatment, covering travel, lodging, surgery, speech therapy and other follow-up treatment - the cost could range from Rs.20,000 to Rs.2 lakhs. "It is entirely free for the patient," Kalra said.

The funding was raised from more than 300,000 donors in the United States, Kalra said. According to Kalra, the Indian government is expected only to create awareness about the programme so that more such people can benefit and conduct a census of people with cleft lip and palate so that the project can reach the maximum number of them.

"I decided to join this project because of the tremendous satisfaction I get out of treating such cases. In the time that I spend on such cases, I would earn five times as much from normal plastic surgery cases. But money is not everything in life," Dr. Devansh said. He has treated about 1,400 patients since he got involved in the project three and half years ago.

Although the Smile Train project is doing a lot of work in this field, help from the Centre has been lacking. Government hospitals are supposed to handle such cases free of cost but the waiting list is huge. According to Kalra, of the 23,000 cleft operations performed every year, only 2,000 to 3,000 are done in government hospitals. The rest are done at Smile Train-sponsored hospitals.

"We have been trying to get the Government of India to recognise this problem so that these people can be helped in treatment and rehabilitation, but there has been no effect so far," said Dr. Suresh R. Tambwekar, president of Indian Society of Cleft Lip, Palate and Craniofacial Anomalies.

"Our aim is to give such people enjoyable childhoods and happy adulthoods," he said.