India Insight

Children who can’t smile – the cleft lip deformity

March 9, 2009

Doctors call it the “ignored problem” and semi-literate parents in India’s rural hinterland view it as a “curse of God”.

Unfortunately, being born with the cleft lip, a physical deformity that can be easily corrected, can alter the course of a person’s life.

Megan Mylan’s documentary film “Smile Pinki”, the story of an eight-old girl with a cleft lip, may have won an Oscar, but for thousands of children living with the deformity, the battle is far from over.

Pinki’s story only came to light after the documentary portrayed how society ostracized the little girl in Rampur Dhabahi village in Uttar Pradesh.

One in 35,000 children in India is born with the deformity every year. An estimated one million cases of cleft lips are left untreated in India and doctors say it is one of the most serious birth defects.

The stigma and ignorance attached with it can push a child to depression.

In the late 80s, I knew an adult with an untreated cleft upper lip and palate who was chased around the neighbourhood by urchins chanting “the man who can’t smile”.

If his humiliation is proof of the plight of people with oral clefts in India, the trauma must be a hundred times more for children as young as five.

There are an estimated four million untreated clefts in the world. It affects people’s ability to eat or speak properly and most children suffer isolation and ridicule because of the deformity.

Officials of the global cleft charity ‘Smile Train’ say parents are known to abandon or even kill babies born with the congenital disorder.

Satish Kalra, the South Asia director of the charity, said patients and parents are not even aware that a cleft can be corrected.

“They think it’s a curse of God and they continue to live with it.”

After “Smile Pinki’”s success there is hope that international recognition of the work done by Indian surgeons will highlight the problem.

But ignorance about the condition, no access to treatment and illiteracy in the rural hinterland will continue to hinder efforts by medical and social workers in providing help to the children who need it, Kalra said.

“Even if we make a conservative estimate that one percent (of clefts) is reached, one percent of four million is 40,000 and that’s a huge number.”

“So 40,000 children can have their lives changed as a result of this Oscar.”

But will the film achieve the desired effect? How many will actually watch the documentary?

Comments
9 comments so far | RSS Comments RSS

Rituparna Bhowmik:

Great choice of the article!

Treated cleft lip is like the rebirth of a kid undergoing misery due to this defect.

Certain details were missing: 1. relevant links of charity organization which deal with this. 2. Also you mentioned “Satish Kalra, the South Asia director of the charity”. 3. Approximate cost of operation or link.

Can you provide these details?

Posted by rajeev | Report as abusive
 

Rituparna Bhowmik:
2. Also you mentioned “Satish Kalra, the South Asia director of the charity”–but did not provide any link.

Posted by rajeev | Report as abusive
 

I’m wondering why operations can’t be done a month later on children born with cleft palate. It’s a sin that they have to grow up like that and it’s something that can be corrected.

 

rajeev – http://www.smiletrain.org/ is the organisation that provides cleft lip/palate surgery. In India the operation can cost as much as Rs 8000 depending on where it’s done.

Posted by rituparna | Report as abusive
 

@http://www.smiletrain.org/ is the organisation that provides cleft lip/palate surgery. In India the operation can cost as much as Rs 8000 depending on where it’s done.
- Posted by rituparna

Rituparna,
Thank you,
Sanjeev

Posted by rajeev | Report as abusive
 

Hi Rituparna,
Thanx for the wonderfull blog and good info for readers ,I was happy to be part of this blog coz i went through Pinki’s Village and photographed her.I m planning to do a Photo Story on Cleft Surgery and I m sure people will know more about this and will help those children who are suffring.

Posted by Pawan-Lucknow | Report as abusive
 

I would like to find about the children who require such surgeries

 

Thanks for the wonderful story with successful outcome.
I will be interested in learning about a doctor with his/her name and email address preferably in north India-Delhi or Punjab to write about the process and make my donationsfor cleft lip and palate surgery
Thank you

Posted by R Grover | Report as abusive
 

hi i am avik mukherjee of kolkata,india age 21 years a student of msc (botany) of calcutta university,unfortunately i am a cleft lip patient my first operation was done when i was 6 months old,the operation was partly successsful as there was a cut mark as well as a very little notch left,so i hv decided to do another operation which was done on 5 th march 2010 by dr.p.k.sinha,hope this time the operation will be a great success,waitiing for that day…………i need ur blessings,i will inform you later about my health,thanx a lot rituparna for creating such blog………..

Posted by AVIK | Report as abusive
 

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