New Delhi, Feb 14: The Indian Council of Medical Research and the Centre for Dental Education and Research of the All-India Institute of Medical Research on Thursday launched IndiCleft, the first web and android-based tool of its kind in the world, to detect lip and cleft patients for treating them as early as possible.
It is estimated that about 35,000 children are born every year in India with cleft lip and palate.
Lip and Cleft is a deficiency from birth in the normal formation of the mouth, with a split in the upper lip or palate (or both) that affects the looks, hearing, speech, nutrition and the psychology of the patient, with long-term implication on the quality of life of the individual and the family.
Early treatment, which must be multi-disciplinary, is the only effective remedy, said Dr OP Kharbanda, Head of the Centre.
'Normally, the corrective treatment and rehabilitation lasts up till 18 years of age, if the deficiency is detected and treated in early stages,’’ he said.
It can happen for genetic reasons, malnutrition or due to prolonged exposure of mother to smoke, radiation and in-take of alcohol and exposure of certain medications during the initial weeks of pregnancy. The treatment is long and time-consuming, but the silver lining is that it is free of cost in government hospitals.
The report was launched by ICMR Chief Balram Bhargava.
At the launch ceremony, Dr Harish Khera of the Ministry of Health and Family Welfare said at least 35000 new patients are detected every year, although no ready figures are available yet on the total percentage of population afflicted by this syndrome.
He spoke of the move to integrate IndiCleft with the Rashtriya Bal Swasthya Programme of the Ministry, to reduce the mortality rate and improve the quality of life of patients.
Making out a case for the disease to be declared a 'notified disease', Chairperson of the Task Force Expert group in the IndiCleft Study PN Awasthi gave the example of an afflicted African woman, who married six times and each time gave birth to a cleft child.
He said there should be a national registry for the number of cases and a clear strategy on how to treat patients. Aim should be to help patients improve their quality of life.
The experts stressed the need for developing protocols and guidelines that could be followed from the primary health care centre, as it required early detection, even during pregnancy. After birth, the proper way has to be taught to a lactating mother to breast-feed a cleft child, so that it is not malnourished or does not die from milk entering the baby's lungs to lower mortality rate.
They also stressed the need for removal of social stigma attached to the disease, by creating better awareness. Dr Manish of the Centre said a proper birth registry must be maintained for proper detection of afflicted children. According to him, it is estimated that out of 1000 normal births in India, one is a cleft child.
On whether the disease, if not genetic, could be prevented, Dr Kharbanda said an enhanced dose of folic acid to a pregnant woman can help.
Combined clinics is most critical for the success of the treatment, he added. An expert from the Centre for Drug Evaluation and Research said research was on to find a genetic therapy, while Dr Hiteshwar from Assam said the prevalence of cleft disease was more in the North-East.
Dr Suresh Sharma from the ENT department said a cleft child has an hearing disability and that needs to be addressed, along with speech therapy, dental correction and plastic surgery. Psychologist Sagar said counselling was important for the patient to come out of the multi-surgery stress.
ICMR's Ashoo Grover said the IndiCleft Tool is part of a study on Cleft Lip and Palate Awareness to ascertain risk factors, clinical profile and management practices. The hospital-based study is on at four sites, including Delhi, Lucknow, Hyderabad and Guwahati, which are high volume centres. (UNI)