No lip service

Treatment of cleft lip, a congenital deformity, is not a priority area in the overburdened government hospitals as it does not affect the rest of the body. However, a foundation dedicated to such patients provides the treatment for free. Arshid Dar reports
 
Cleft lip and cleft palate is one of the most common congenital facial deformities. The children with such a deformity have a prominent split in the upper lip which may continue till the hard and soft palate area.

“Heredity or any other disturbance during embryological development (during 1st trimester) to the oro-facial region will result in the formation of oro-facial cleft,” says Dr Mohammed Shakeel, Project Director, Maaya Cleft Centre Hazratbal, Srinagar. “The disturbance can arise from viral infections, exposure to radiations, influences of drugs, excessive use of antibiotics, steroids, insulin and anti-epileptic drugs, deficiency of vitamin A and B, anemia, stress, excessive consumption of alcohol, excessive tobacco, consanguineous marriage and maternal age,” he adds.  

As the disorder most often does not affect the normal development of the rest of the body, the overburdened government hospitals don’t treat these cases on priority, diminishing the chances of full recovery, says Dr Shakeel.

The surgery for cleft lip can cost between Rs 25000 to 30000 in private hospitals, says Gh Rasool Malik of Khumbrial Kupwara whose two children have been operated for the cleft lip.

However, Maaya Cleft Foundation (formerly known as Kimaaya Cleft Foundation) established with help from German Cleft Children Aid Society deals solely with cleft lip cases and treats patients for free. The foundation set up a Maaya Cleft Centre and Craniofacial Research Institute at Hazratbal, Srinagar in December 2007.

“Our services are absolutely free and include everything from admission to discharge that is consultation, medicines, surgery, stay, food and even revision of the cases where complications arise,” says pediatric anesthetic Dr Sameer Ibrahim who has been working with the foundation since 2008.

Project Director, Maaya Cleft Centre Srinagar, Dr Mohammed Shakeel says, “We have done some 800 operations in the last four years and the main deformities that the centre treats include cleft lip, cleft palate, hemangioma (lakhchum in kashmiri) and other congenital and post traumatic deformities of face, skull and orbit.”

More than twenty surgeries are done at the Maaya Cleft Centre at Srinagar every month. The surgeries are done on Fridays and Sundays.

“The success rate since our beginning is 98 per cent,” says Dr Basharat Ahad, pediatric anesthetist.

The foundation trains its doctors at national and international level besides inviting, sometimes, renowned cleft lip surgeons from outside.

“Prof KS Rao, President Maaya Foundation (India) is also invited for some cases. Dr Hans Lobey President German cleft children aid society was also here for a surgery,” Dr Shakeel says. “Tele-conferencing, visits of outside experts to Srinagar and ours to other centers are a regular feature so that everyone stays abreast of the latest developments in the field.”

The treatment of cleft lip and cleft palate, doctors say, involves many steps and sometimes patients don’t turn up after the initial work has been done.
Maaya foundation in India operates on the funds that come from the German Cleft Children Aid Society or philanthropists in corporate India.

“The funding pattern is such that we have to send record of every case that we do and after that they reimburse the expenses, we take every care to minimize the expense so that we are able to do more cases” says Dr Shakeel.

“We don’t have a hospital of our own as of today but we have a tie up with one private nursing home where we perform surgeries and the foundation pays the hospital after every case,” says Dr Sameer.

“Many of the hospitals of the foundation in India are run by corporate houses who provide the infrastructure and bear the expenses as CSR and we are looking forward to Kashmir inc. for such a gesture” says Dr Shakeel. “We are thinking about acquiring some space at Hazratbal for our own surgical facility and have a full fledged hospital for the foundation in our city with an aim to Kashmir cleft-free. ”

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