In a move that would ensure smile on the faces of the kids born with cleft lip and palate— a common congenital facial deformity affecting one of 750 newborn in India—the Union Health Ministry is preparing guidelines envisaging uniform treatment protocol for such patients who need multidisciplinary approach extended from birth until adulthood.
The facial deformity adversely affects feeding, speech, facial aesthetics leading to chest infections and ear problems. According to experts, a child with such congenital deformity needs a first corrective surgery at the age of three months with final one being done when the child is 18 years old. However, in the absence of requisite orthodontist or speech therapist and timely intervention, a child has to suffer dental and speech problems throughout his/her life. Prevalent stigma just adds to the agony of the child.
“We hope the guidelines being prepared by the ICMR under the Union Health Ministry will help in streamlining the treatment as well as uniformity in procedure in the country,” said Dr OP Kharbanda, Chief of Centre for Dental Education and Research (CDER), AIIMS Delhi.
An expert committee to formulate guidelines for cleft care in India has been set up under the Indicleft task force project which is being funded and supported by the ICMR.
The panel is likely to submit final guidelines in next couple of months. “The need for guidelines in India are due to different nutritional status of new born children, their fitness to undergo general anaesthetia, comprehensive Orthodontic care required to treat severe malocclusion and protocol for speech therapy,” said Dr Kharbanda who is also part of the panel.
He said, “The timing of carrying out certain procedures for repairing the cleft is very important. For example, a lip repair to close the gap is advisable at the age of three months; the hard and soft palate repair is advisable at nine to 12 months; speech therapy should start by 12 months; early orthodontist treatment may start at six years, while final surgical correction of the lip and nose deformity can be done at 18 years”.
Hence, said Dr Kharbanda, “Expertise from specialities such asGenetics, Psychology, Nursing, Plastic Surgery, Paediatrics, Orthodontics and Speech and Language Pathology is needed to cater to each child with a cleft and their families.”
In this direction, the AIIMS has recently opened a “first-of-its-kind” clinic at CDER premises to provide integrated care under one roof. The ‘Interdisciplinary Cleft Lip and PalateClinic’ is equipped with the latest state-of-the-art equipments and facilities where a treatment plan can be tailored as per the patient’s need.
Presently, there are just 210 designated cleft lip and palate centres in the country and annually, at least 1.5 lakh surgeries are being done.
“But we are still far behind. A large number of children never get help due to ignorance and fear of expenditure even as a majority of these procedures are carried out free of cost,” said Delhi-based orthodontist Rakesh Malhotra, member of the Indian Society of Cleft Lip, Palate and Craniofacial Anomalies (ISCLPCA). The Society is pushing to get February 8 recognised as National Cleft Day to generate awareness about the cleft lip and palate condition.
Similarly, Smile Train India, the world’s largest cleft organization, has joined hands with The Federation of Obstetric and Gynaecological Societies of India (FOGSI), India’s largest association of gynaecologists and obstetricians, to drive early diagnosis and intervention for children with clefts, as early as the foetal stage by educating healthcare professionals.
The gap in the lip and the palate is formed when tissue from both sides of the face fails to grow and fuse together. There are various kinds of clefts: an isolated cleft lip (just the lip), or a cleft lip with a cleft alveolus (the gummy portion where teeth erupt), a cleft lip, alveolus and palate all fused together.