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MENTAL HEALTH

To smile like Pinki

Photo: Rajeev Bhatt

Fairy tale: The story does not end with the surgery alone.

In the last few months, Pinki Sonkar and her smile has been the subject of many a news report. Amid the euphoria of multiple Oscars for “Slumdog Millionaire”, we haven’t forgotten to appreciate and laud the achievements of a documen tary film by Megan Mylan.

Winner of the Academy award for the best short documentary feature, “Smile Pinki” is the story of Pinki from Mirzapur, whose life was literally transformed overnight by a surgical procedure. Born with a cleft lip, Pinki was often ostracised, and her family was unaware that there was a simple enough solution. Luckily, the “real-world fairy tale” then happened.

This surgical procedure, to repair or close the cleft palate, might lack the glamour associated with others but is, without doubt, a labour of love and dedication. As someone born with these congenital anomalies way back in the 1950s, I am truly delighted with the award bestowed on “Smile Pinki” and hope that it will lead to an overall increased awareness and social acceptance of this unrecognised problem.

I am confident that many more families will become aware of and opt for surgery for their children. If that does happen, it might well be an even greater reward for the film than the Oscar itself.

But the story does not end with successful surgery alone. In cleft lip and palate (CLP), as with many other conditions, the psychological repercussions could well overshadow the actual physical disability.

When I wrote the story of my struggle with cleft lip and palate eight years ago in The Hindu, I was deluged by requests from many families who wanted me to speak to and counsel their children who had been operated for CLP.

Now in their twenties and thirties, they continued to labour under low self-esteem, lack of self-confidence and extreme shyness, although surgery had taken care of the cosmetic problem. Many of them also shared a reluctance to socialise, often choosing to be alone. Some, of course, continued to have speech difficulties despite closure of the gap in the palate.

I am not aware of many studies from India on psycho-social problems of CLP, but international scientific literature is replete with a number of references. A study in France compared education, employment and the marriage of persons with CLP with a “normal” population. This study found that the educational attainment of persons with CLP was significantly less and, although they held jobs, their levels of income were lower. Many did not marry and those who did married late. The researchers concluded that “the CLP group, even with the smallest degree of malformation showed a significant delay in the independence process”.

In Norway, over 200 people with CLP participated in a survey to assess common psychological problems. They reported twice as much anxiety, depression and palpitations compared with the general population. Concerns about appearance, dentition, speech and the desire for further treatment were also strongly expressed by those with CLP.

Unfortunately, not all cleft teams carry out a psychosocial assessment as part of the treatment package; one report estimates that only 20 per cent do so, globally. In my own experience, I have not come across anybody with CLP who has not experienced some kind of emotional or psychological problem, at different stages of their lives.

Across the world, many children and teenagers with CLP have been victims of bullying and teasing by their peers at school and college. Some have been driven to ending their lives.

Teachers can play a critical role in helping the child adapt to his environment and cope with the problem, which tends to be more severe during the beginning of a new year at school. Accompanying hearing loss or difficulties, poor attention span and frequent absences from school in order to keep medical appointments may compound the problem. Teachers could encourage these children to address their classmates, take part in debates and other group activities. Explaining the actual nature of the problem to the other children and encouraging an open discussion (with the consent of those involved) could also facilitate better understanding and restrict teasing to a minimum.

Families of those with CLP also require help. When the child is born with this problem, many parents are shocked and dejected and the first impulse is to reject the child. Feelings of loss, grief and sometimes guilt accompany the birth. These complicated emotions are further compounded by the burden of having to take care of a child who will require several modes of treatment and may face an uncertain future. Many parents do not discuss this with their friends or family.

Talking to other parents facing similar problems is bound to help a lot. Support groups for persons with CLP and their families are available in some countries abroad and I believe it will be good to start some in India as well. Interventions such as counselling and social interaction skills training should be offered routinely to all patients with CLP. The earlier the foundations are laid for acceptance and coping with the problem, the better the psychosocial outcome is.

CLP is one of the many physical disabilities a child can be born with or acquire, but the psychological ramifications are largely on account of its cosmetic sequel. Parents, teachers, friends and doctors have all a role to play in enabling a child to cope with this. Any failure to cope with the problem could leave a person permanently scarred, not just physically but emotionally as well.

Personally, my belief is that all persons with CLP should begin to accept themselves as they are, and as early as possible. Let not your physical appearance control how you lead your life. If you see yourself as normal, others will follow suit.

The writer is a Chennai-based Consultant Psychiatrist.

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