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A smile so special

More smileage to her life Pinki Sonkar

We’ve heard a lot about little Pinki Sonkar from Mirzapur of late. We’ve seen her pictures at the Oscarsand heard about how she fell asleep before the award was announced for "Smile Pinki", the documentary about her cleft lip surgery.

Hers has been a heart-warming journey. But, maybe it’s time we looked beyond Pinki, and explored the larger issues her story throws up - such as what’s being done to help children born with cleft lip and palate conditions in our cities, and what more remains to be accomplished. Because, the cleft spectrum of problems - and they range from the simple cleft lip, to more serious conditions that can involve the entire face - are a harsh reality that children, their families and surgeons have been dealing with for decades.

One of the biggest challenges facing medical practitioners even today is the lack of awareness about the condition in rural areas, according to Dr. Jyotsna Murthy, chief co-ordinator of Sri Ramachandra Medical Centre’s Cleft and Craniofacial Centre, which works with Smile Train in Chennai

"The first thing I ask a child who comes to me from a rural area is ‘do you go to school?’" she says. "And, far too often, I hear answers like, ’no, my teacher told me you look like a devil, don’t come.’ We’ve been trying to sensitise anganwadi workers and village health nurses in places such as Vellore, Villupuram and Tiruvallur, so that they can talk to teachers and give support to parents." That support can be as basic as teaching worried parents how to feed a child born with a cleft palate.

Take the case of 15-month-old Muthuraj from Tirunelveli District. He recently underwent palate surgery at Sri Ramachandra. "Earlier, he would find it difficult to drink milk and water - it would come out of his nose. It was very hard for us to see," says his mother Pushpa. "Now he’s able to drink normally."

But for Muthuraj, it doesn’t stop with just one surgery. "Children with a cleft palate require lip and palate surgery in infancy, followed often by bone grafting between age seven and 11, and jaw and nose reconstruction in their teens," says Dr. S. M. Balaji of the Balaji Dental, Craniofacial Hospital and Research Institute.

"They also require several additional rehabilitation services - speech therapy, orthodontic treatment and psychological counselling," says Dr. Jyotsna.

"While a lot of experienced surgeons perform cleft palate procedures in our government hospitals, they often lack good support teams."

The numbers underlining the need for such teams are compelling - 20 to 30 per cent of infants who undergo cleft palate surgery will develop speech problems. If they’re older at the time of surgery, the number shoots up to 80 per cent.

Similarly, she says, studies have shown that 75 to 80 per cent of these children face isolation from peers, and benefit from counselling.

Which leads us to the other need of the hour, according to Dr. Balaji - research on modern technology that can reduce the trauma suffered, and perhaps even prevent the condition one day.

"A cutting edge treatment available for cleft palate today is BMP, a protein that simulates genetic signalling, so that the bone forms and fuses normally," he explains. "With more research, BMP can be implanted on the foetus, so that the child isn’t born with a cleft condition at all," he says.

"Why restrict ourselves to decades-old treatment when we can take advantage of the latest technology?"

The FDA-approved treatment costs up to Rs. 1.5 lakh per patient, but Dr. K. N. Chinnaswamy, from Krishnagiri District, had no doubt choosing it for his 12-year-old granddaughter Bhavatharini, last year, at Dr. Balaji’s hospital.

"The other option was taking bone from her hip for grafting, which would mean another surgery for a girl who’s already suffered so much," he says. .

Perhaps a day will come when the condition can be prevented. Meanwhile, doctors do their best. Which means that Bhavatharini now confidently explores her love for folk dance. And little Muthuraj says the two words he knows, ’amma’ and ’mama’, clearly, to the delight of his family.

Face Facts

Every 11 minutes, a child with a cleft lip or palate is born somewhere in the world.

One in 700 children in India is born with the condition, with 35,000 cases reported every year.

Since 2000, Smile Train has funded 6,000 free cleft surgeries at SRMC (for details go to (http://www.srmc.edu/smile_train07.htm)

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