Policy & Issues

No more a curse of God

In February 2009, nine-year-old Pinki Kumari Sonkar from Mirzapur, Uttar Pradesh became the face of Smile Train, a world-wide charity-based movement for surgical correction of cleft lip and palate.

United States-based film maker Megan Mylan's Smile Pinki won the Oscar for the best short film for a 39-minute narration of Pinki's transformation — from a girl unable to go to school because of a cleft upper lip, to one who overcomes the stigma of a congenital defect after it is corrected through surgery by Smile Train.

This brought into focus a movement that made a huge difference between hope and despair for economically weak families that have children with cleft lip and palate.

Pinki's life was transformed by a chance encounter her parents had with a social worker, who was on a visit to various villages to tell people that there was a surgical solution to what they believed was a curse of God. She was operated upon and later put in a residential school near her hometown.

More than 2.5 lakh children have been operated upon in the country over a decade. But Smile Train says that an estimated 10 lakh more cases have to be covered.

The finding, so far, is that the cleft is a disorder impossible to prevent, though various reasons (see graphics) have been cited for its occurrence. The option is to identify cases continuously through Smile Train's network. The focus is on making more people aware of a movement that takes upon itself the financial burden of surgery for poor children.

Ashish Sabharwal, in charge of Smile Train's project in Gujarat, Madhya Pradesh, Rajasthan and a part of Maharashtra, says cleft does not differentiate between the rich and the poor. But, poverty stands in the way of a 45-minute surgery that costs only Rs. 12,000. That is why social workers of Smile Train go deep into villages to tell the poor that surgeons trained in bridging the cleft are doing these free of cost.

Says Dr. Sabharwal: “The problem is common — 1:700 births. The richer countries and the richer strata have access to treatment and surgery, whereas the poor languish because of lack of financial and medical resources. Even the poor awareness level is a big hurdle.”

President of the Association of Plastic Surgeons of India (APSI) and Director of Ganga Hospital (Smile Train member) in Coimbatore S. Raja Sabapathy says: “Of all the charity-based medical programmes, Smile Train's cleft surgery will rank high simply because it deals with a deformity that has immense social impact.”

Director-Programmes of Smile Train in India Mamtaa Carrol, who has followed Pinki's case closely, explains that this deformity is not easily accepted. She recalls an elderly woman in Pinki's village saying that being born a girl was by itself a curse. The cleft lip added to the misery.

Ms. Carrol is following up Pinki's progress at the residential school in Mirzapur. Pinki does not even want to go home to her parents, two brothers and two sisters on weekends. She loves her classes because she is accepted by others now. She wants to make up for the time she had lost because of the cleft lip. “Her progress at school has been quick, though her formal education began late. This is what Smile Train has done to her.”

“There are thousands of girls like Pinki who have benefitted from Smile Train, helping them overcome isolation,” says Dr. Sabharwal.

The programme has succeeded so far because of local surgeons being able to reach out to the community around them. “The demand has been met with more manpower, and with absolute quality control,” says Dr. Sabapathy.

The APSI president describes H.S. Adenwalla, Head of the Charles Pinto Centre for Cleft Lip and Palate at Jubilee Mission Medical College and Research Institute in Thrissur, Kerala, as an outstanding example of a single surgeon performing a large number of cleft lip and palate surgeries and thereby epitomising the spirit of the Smile Train movement.

For more information, log on to >www.smiletrainindia.org and >www.smiletrain.org . Dr.Ashish Sabharwal can be contacted at drashishsabharwal@gmail.com.

The story has been edited since it was first published.

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Printable version | May 20, 2022 2:58:55 pm | https://www.thehindu.com/sci-tech/health/policy-and-issues/No-more-a-curse-of-God/article13473855.ece