The surgical route to smiles

little miss sunshine:  The ‘Smile Train Express Project’ has brought many  innocent lives back on track

In India, every year nearly 30,000 babies are born with cleft lip and cleft palate (roof of the mouth, which means at least one newborn for every 800 live births is born with this deformity at birth. In fact, the documentary Smile Pinky, which won an Oscar this year, deals with the plight of a girl, Pinky, born with a cleft lip and about a boy, Gutru, born with both cleft lip and cleft palate. The documentary heartrendingly picturised the smiles brought not only on Pinky’s and Gutru’s lips, but also on their parents’.

This congenital disorder assumes socio-economic significance because of the stigma associated with the disorder (facial disfigurement) and of the fact that nearly 75% of the families where such babies are born, belong to the BPL (Below Poverty Line) group where the monthly earning of each family is less than Rs 1,750.

‘The Smile Train Express Project’ which was launched in 1999 (headquartered in New York) not only began funding free-cleft repair surgeries of newborns and older children (of BPL families) in more than 50 developing and underdeveloped countries, but also ensured quality surveillance of the treatment. Initially, the project was meant to be established through a train, which would travel around these countries having a team of specialist doctors and necessary equipment on the train to treat the patients with clefts. But, the obstacles involved in transporting specialists and equipment to various countries posed a logistical problem.  Hence, the founders and the organisers — though retained the original popular name Smile Train Express Project — started partnering with various hospitals in several countries and providing training to thousands of doctors and healthcare professionals in the field of “advanced cleft repair surgery and related care.”

Says Dr Krishnamurthy Bonanthaya (former professor at The Nitte Institute of Cranio facial Surgery and A B Shetty Dental College, Mangalore), who is in charge of the project’s sub-centre at Bhagavan Mahaveer Jain Hospital on Millers Road, Bangalore: “Cleft lip and cleft palate are congenital disorders. There are several causes which can contribute to this by-birth defect, such as the deficiency of folic acid and homocysteine in a pregnant woman, certain infectious fevers which a pregnant woman may suffer in the first trimester of pregnancy or ingestion of drugs or medications (teratogenic drugs) harmful to the fetus in the first three months of pregnancy. Also, when the husband and wife are near blood relatives (as it happens in a consanguineous marriage) chances of the newborn having this disorder increases.”

Reasons behind the abnormality
Exposure of pregnant women to pesticides and lead are cited as other preventable environmental reasons resulting in clefts. Clefts can be genetic, wherein a specific variation in a gene can result in such an abnormality. If the embryonic primitive tissues fail to fuse, a gap appears where the tissues should have fused and this gap can result in cleft lip, cleft palate (which can be either on one side or both the sides) and / or naso maxillary cleft (gap in the nose and the upper jaw). In a ‘complete cleft’, the gap in the upper lip continues in to that half of the nose. In a cleft palate, the two plates of the skull which form the palate or the roof of the mouth fail to fuse adequately. Cleft palate can also occur along with a gap in upper jaw. A palate cleft abnormally connects the mouth directly to the nasal cavity, hence if the cleft is left untreated it can result in respiratory tract and ear infection.

Facial clefts not only are of aesthetic significant or challenge, but they also pose functional challenges. A newborn with a cleft lip will not be able to suck breast milk properly and hence can suffer nutritional deprivation and growth retardation. If the newborn has got cleft in the palate and the upper jaw also, then the food can get misguided to the respiratory tract (instead of the food pipe), which can result in infection of the bronchi and the lungs, resulting in bronchitis and pneumonia. If surgical repair is not done at an appropriate age, speech gets affected, which can have a negative psychological impact in the form of inferiority complex due to defective speech. Untreated adolescents may develop depression and aggressive behaviour.

Two surgeries
There are two types of cleft surgeries required by a baby born with a cleft lip and cleft palate. The child will have to undergo one or more of the primary procedures such as cheiloplasty, palatoplasty and alveolar bone grafting (depending on whether the cleft is present only in the upper lip or also present in the palate and in the maxilla i.e. the upper jaw and the cheek bone). Later on, depending upon the appearance of face after primary procedures and before the eruption of secondary teeth (around the age of nine years) secondary surgical procedures such as lip revision and fistula closure may be required in about 8% of children.

Says Dr Krishnamurthy, who has been conducting nearly 600 cleft repair surgeries every year along with his team of specialists under the Smile Train Express Project since 2005 at the BMJ Hospital: “Primary procedures such as cheiloplasty and palatoplasty should be done as early as possible in an infant.  We normally do the cleft lip repair if the infant’s age is around three months or more, with its body weight being at least 5 kg and the haemoglobin percentage in the blood being not less than 10 gm percentage.” Cleft palate can be best repaired if the baby is around 10 months or 1 year of age, because if the palate repair is delayed, the child would develop defective speech due to anatomical anomalies. Most of the parents do not turn up for the follow-up for counselling and speech therapy. “To enlighten parents that repair of clefts does not end with surgery alone, but require a multi-disciplinary, long term, intermittent approach, is a Herculean task for us.”

The Smile Training Express Project also works in the field of nutritional counselling, genetic counselling and speech therapy.  
The project has set up over 150 sub-centres in India including Mangalore, Mysore, Dharwad and Davangere. In Bangalore, the other sub-centre is operating at The Bangalore Hospital on R V Road, near South End Circle, Jayanagar.

Dr Veena Bharathi
(BMJ Hospital: 080-41100550, 41076718. Bangalore Hospital: 41187600)

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