By Sakshi Jain:
Unlike the usual merriment around a child’s birth, Dinesh’s birth brought disappointment to his parents, they even considered ‘discarding’ the newborn to a garbage dump. Dinesh had a severe cleft lip at the time of his birth which instigated a sense of frustration in his father because of his financial incapability to treat the unexpected birth defect.
Cleft lip is a medical condition involving a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. It often extends beyond the base of the nose and includes the bones of the upper jaw and/or upper gum. Contrary to the general understanding of being a cosmetic problem, it is a serious birth defect leading to other problems like difficulty in feeding a child, higher chances of ear infection and hearing loss, dental problems and speech difficulties. It also leads to breathing and respiratory problems.
More than the medical complications, social, psychological and behavioural traumas affect people with cleft lips more.
In a world where social acceptance seems to depend on physical looks, people with cleft lips are judged as ‘abnormal’ and discriminated because of their birth defect. Research has shown that attractive children are seen by others as brighter, having more positive social behaviour and receive more positive treatment than their less attractive counterparts. Thus, self-perception of people affected by cleft lip and palate anomaly get influenced by the social perspective and the need to look attractive, thus hindering their self-esteem and social competence. Moreover, the attitudes, expectations and degree of support shown by parents also influence a child’s perception of their cleft impairment.
In India, close to 35,000 children are born with cleft lip and palate every year and many of them are abandoned or killed. Almost every child with the cleft undergoes social atrocities.
Such is the case of a 40-year-old woman Shubhawati, married off at the age of 15, from Ratanpura district in UP who suffered from this birth defect. Having being deprived of adequate medical care at the age of one, she spent her forty long years of her life in isolation being deprived of school education, social rejection during gatherings and functions and was subjected to distasteful remarks by people. However, she kept praying for a ‘normal smile’.
Smile Train, one of the world’s largest cleft organisation with partners and programmes in over 80 countries, brought the ‘normal smile’ on the face of Shubhawati and gave Dinesh a second chance in life through a 45-minute surgery at no cost. In addition to free cleft surgery, support services like speech therapy and orthodontics helped them fully integrate with their peers.
In a country where more than half do not receive any treatment because of their lack of awareness about treatment or affordability issues, Smile Train India, started in 2000, aims to spread smile on every child’s face through these surgeries to treat cleft lip and palate at no cost through a network of 170 hospitals in the country. Since its inception, it has sponsored over 450,000 surgeries across the country.
Like Shubhawati and Dinesh, many more such cases need to be highlighted and many more smiles need to be spread. Such health issues need proper attention and categorization rather than relegating it as a cosmetic defect and building social stereotypes around it.