My Happy Smile - A Personal Story
By Yen Thanh Mac, MD
Cleft lips and palates (CLPs) are the most common human facial malformations. Depending on the ethnic and/or geographical origin of the studied populations, they can affect up to 1 in 500 newborns.
There have been a lot of foundations whose names have the word "Smile" in them such as "Operation Smile", "Wide Smile", "Thousand Smile", "Smile train". They help resource-poor countries access the best surgeons and equipment in order to help children with CLPs smile again. Having been born with a cleft lip, I have been thankful to these foundations, but have also found that besides medicine and equipment, we need more love from our society to have happy smiles.
I have a post-operative cleft lip scar, but my speech is intact. Nicknames, teasing, harassment hurt me during my childhood and adolescent years. Although I studied very well, I was not respected by my friends. I felt there was a pull between who I am and the way I look. Did my friends and neighbours accept me for who I am or did they pity me because I am different? Or is it because I look different I must be different? Why couldn't others see past the outside? Why did society's fears and ignorance keep me from learning to accept myself?". I started having insomnia when I was 13 years old. At that time I had not known I had psychological problems until I was 20 years old when I had a thought of suicide. One of the possible explanations for this phenomenon is that when one has a very severe deformity it is relatively easy to predict what is likely to happen when one walks into a room. People will stare, they will perhaps turn away, they make rather unnecessarily unkind remarks, but certainly there will be some reaction everywhere one goes - apart from situations in which one is known. But if one has a relatively minor blemish one cannot make that prediction, because many people will pretend not to notice it. Some people will not notice it anyway, but many people will pretend not to. There is a degree to which people with a relatively minor blemish, will, because they are unable to predict what is going to happen to them have their anxiety raised (R Lansdown, 1990).
According to many research findings, anxiety, depression, and palpitations occur about twice as often in subjects with CLPs compared with controls, and these psychological problems are strongly associated with concerns about appearance, dentition, speech, and desire for further treatment. Children with cleft lip and palates often experience psychological problems from an early age. At each developmental stage, they report distinct psychological problems because of their visible difference, with experiences of negative self concept, and social difficulties such as teasing, difficulty making friends. Children with CLPs were teased because of their clefts, and it affected their self-confidence.
Children with CLPs have the right to live happy, healthy and normal lives. Besides operation and speech therapy, health staff in low-incoming countries must care about CLP children's quality of life and the quality of their smiles. To prevent these various psycho-social problems, there needs to be liaison support by psychologists, social workers, school teachers, medical doctors and nurses from their early age. CLP patients who are concerned about their appearance or who experience psychosocial problems need to be identified by cleft teams. In addition, children with CLPs need more love and sympathy from their neighborhoods and their school friends. It has been suggested that cleft children may be responding to the social-behavioral environment which may include negative social responses from others. Social workers and other stakeholders in low and middle income countries must explore ways to influence social thoughts as they relate to deformities and disabilities that affect children.
I did not have any friends with CLPs until now. I was alone. I wish I could have expressed my feelings with other children who had similar issues to me, and been given helpful information during my childhood. If I could join any CLPs Clubs as a child I feel my anxiety diorder would not have occur - or at least not as much. Children thrive when they feel connected. Connection is a basic need of all human beings. It is as vital to a child as water, sleep and nourishment. Feeling connected gives a child confidence. A child's sense of connection breaks several times daily, as people don't always consider how a situation can frighten a child. When a child doesn't feel connected, their judgment becomes impaired, they become unable to cooperate and they stop enjoying life. One purpose of group therapy for children is to give them a consistent place where they can count on feeling connected. This sense of connection builds self-esteem.
Children with CLPs as well as other Non-Communicable Diseases (NCDs) need to communicate with one another! Clubs for children with chronic health conditions urgently need to be developed. It is not difficult to hold clubs for children with CLPs in resources-poor countries if we really wish. We don’t need much money to build clubs... the thing we need is the love for children.
Thank you so much for sharing my story, my concerns about children with CLPs!!!
Yen Thanh Mac, M.D.