We all know that physical attractiveness is highly considered in today’s society even if the concept of beauty has changed radically from what it was before. And about smile, “the expression one wears on one's face is far more important than the clothes one wears.”
Usually, when a baby is about to born, the family members get elated to welcome the new member and they start guessing who she or he will look like. They wait anxiously to have a first look at the child. But in that case when the child is born with cleft, the enthusiasm instantly gets dripped. In fact, most of us are not ready enough to accept a child with cleft as same to a normal child; may be attributed to our lack of understanding on cleft.
However, cleft lip and palate malformations have a global occurrence of up to 1 in 500 live births worldwide and in India, an estimated one in every 800 children in are born with cleft lip or palate. Various research studies and data reveal that about 35,000 children in India are born with a cleft lip and palate every year and sadly one out of ten of these children hardly get to see their first birthday. As a fall out of our ignorance on cleft, people face myriad of problems in their life such as social ostracization, prejudice and many more.
What is cleft lip and palateIJ
Cleft lip and palate are genetic facial deformities that can occur separately or together. A cleft lip can range from a small notch in the lip, to a more severe gap in the lip that proceeds up to the base of the nose. Cleft lip may occur on one side, or both sides or the mouth. A cleft palate is where the two plates that form the roof of the mouth are not completely fused together, creating either a soft palate or a gaping hole in the roof of the mouth that exposes the mouth to the nasal cavity.
Myth versus reality on cleft
Research studies and individual interview results have revealed that many of the families ascribe the cleft to natural causes or God’s wish. Families are also convinced that cleft has come as a punishment to their sinned activities in the past. In some cases, mother of the child is blamed that she must have some illicit relationship other than husband that has cursed her cleft child. Other factors than people attribute to the deformity are solar eclipse during pregnancy, a previous miscarriage, and in one case prematurity or if any family has a history of cleft.
However, scientists who are researching on the cause of cleft have revealed in a study that mothers who regularly take multivitamins containing folic acid before conception and during the first two months of pregnancy may have a reduced risk of giving birth to a baby with a cleft. Research also indicates a link between maternal smoking and an increased risk of clefts. High doses of vitamin A have also been suggested to play a role in some birth defects, including cleft lips and cleft palates.
Stigma and social effects of cleft
Stigma and social discrimination is as such synonymous with cleft. There are also inequalities existing in terms of access to and quality of cleft care between urban versus rural area and between the rich and the poor. A majority of these children and adults hail from poor families and they can hardly afford to a cleft surgery. Many of them are also unaware that cleft can be treated. It is estimated that there is a backlog of one million cleft cases in India and the systems that are in place are not sufficient. However, concerns about the well-being of children born with a cleft lip and/or palate have stimulated research in various fields (Hunt et al., 2006). The incidence of behavioral and social problems in infants and children born with clefts suggests that these children are at risk for social-interactive difficulties (Collett and Speltz, 2006), as well as for difficulties with communication and cognitive competencies (Field and Vega-lahr, 1984).
Can they get a second chance at life after surgeryIJ
It is important to know and help others understand that cleft is treatable. Organizations like Smile Train and Deutsche Cleft-ABMSS have been providing free medical treatment for people with cleft. It is reasonably expected that the child’s life would be definitely better after the deformity was corrected. There can be seen a lot of improvement in terms of speech, feeding and most importantly appearance and self-confidence once the cleft lip/palate or both are corrected.
Policies covering cleft care in India
The Government of India has the Rights of Persons with Disabilities Act 2016 which classifies physical disabilities of various parts of the body but unfortunately cleft lip and palate is not considered a disability. If somebody has a cleft, they may not be able to speak normally, eat; thus a sufficient reason to be included under the Act if we define ‘Disability’ in true sense.
The Rashtriya Bal Swasthya Karyakram (RBSK) is a new initiative aimed at screening over 27 crore children from 0 to 18 years for 4 Ds -Defects at birth, Diseases, Deficiencies and Development Delays including disabilities. Children diagnosed with illnesses shall receive follow up including surgeries at tertiary level, free-of-cost under the National Health Mission that includes cleft lip and palate.
As per the information received under the RTI from the Union Ministry of Health and Family Welfare, the scheme is being implemented with a total number of 11,420 RBSK mobile health teams across the country and a total of 24,547 children with cleft lip and palate are identified only in the financial year 2016-17. But this is just the beginning.
The figure of cleft children further calls for a triggered effort to prioritize the issue, identifying scope at both the Government as well as non-profit institutions to bridge the gap that exists between supply and demand and help people with cleft lead a second chance in their lives.
There is no noble way to help people with cleft to bring back their smiles and allow them to lead a dignified life. But even after sustained efforts, most of the people, especially in rural areas, are unaware about cleft and related facilities. Therefore, the Government as well as cleft care organizations go together in helping people understand about cleft, its causes and available facilities through massive social awareness drive. We all should team up our effort to ensure that people are aware about cleft and let them live a dignifiedlife with brighter smiles.
(The writer is a columnist, a policy analyst and a social sector professional based in Bangalore. He can be mailed at: firstname.lastname@example.org)