Smile Train India is putting the smile back on the faces of kids with cleft lip & palate

Over 35,000 children are born every year in India with a cleft lip and palate. A common birth condition, these are openings in the upper lip, the roof of the mouth, or both. They are caused when the facial structures that are developing in an unborn baby don’t close completely. Thousands go untreated when it can be corrected. Helping to change this scenario is Smile Train. That’s our feature on #StoryOfTheWeek.

All parents love to see a smile on their child’s faces but for Laxmi from Haryana, a smile on daughter Anshu’s face is something extra special. Anshu was born with a cleft lip and palate. Doctors said it could be treated, but Laxmi could not afford the surgery costs.

Then, one day, a representative from a plastic surgery centre in Hisar told her about Smile Train. “He told us about Smile Train’s free cleft treatment programme. We visited the hospital to get Anshu treated. Her first smile after the surgery is etched in our memories forever. Anshu’s smile was always beautiful, but this one was special”, says Laxmi with a smile.

It is happy endings like these that Smile Train, a non-profit headquartered in the United States is enabling in low and middle income countries around the world. A common birth condition, cleft lip and cleft palate are openings in the upper lip, the roof of the mouth, or both. They are caused when the facial structures that are developing in an unborn baby don’t close completely. It can be treated, in most babies surgeries can restore normal function with minimal scarring.

Challenges in India

However, in India, the condition goes untreated for three reasons – lack of awareness, poor access and lack of affordability. The superstitions, says Mamta Carroll, Vice President and Regional Director, Asia, Smile Train, are often the hardest to counter.

One in 700 babies are born with a cleft lip/or palate globally. And 35,000+ new babies with clefts are born every year in India. It is often attributed to the mother’s karma. There are many taboos surrounding woman, questions like ‘who is this woman who has given birth to a defective child’. Then there’s another superstition that the child is the Lord Ganpati because of the bump on the face and should be worshipped not treated. Another myth is that the mother when pregnant held a sharp knife during a lunar eclipse and so on. There’s disability and gender stereotyping at the same time. – Mamta Carroll, Vice President and Regional Director, Asia, Smile Train

Things are much worse for when it’s a girl child with a cleft lip/palate. “Male children are treated much earlier”, adds Carroll. “When it comes to girls, we have to counsel the parents and create the awareness that treating the girl at the right stage is as important”.

To address such varied challenges, Smile Train India works at multiple levels – awareness, education and counselling. It’s not just the families, few village doctors or even primary health centres are aware the condition can be treated.

Smile Train India works closely with the Federation of Obstetric & Gynaecological Societies of India (FOGSI), which has over 30,000 gynaecologists registered with it. ‘We counsel them on how to advice mothers to take care of their kids”, says Carroll. This is critical as babies with cleft lip/palate often lose out on early nutrition as they are unable to nurse. Nutrition is key to be up to speed with the surgery.

Not only is surgery and intervention offered for free, Smile Train India compensates families for any wage loss suffered while their child is undergoing treatment. They are also offered transport assistance to get the treatment facility.

Rukhsar Shameem is a counsellor at the G S Memorial Hospital in Varanasi, which is among the 150 partner hospitals that Smile Train works closely with in India. “I have to counsel parents every week. People from underserved socio-economic backgrounds are often unable to make hospital visits. The great thing about Smile Train is that they support parents by reimbursing their transport and food costs, and this goes a long way in motivating them to come visit us. These appointments are important, as I can talk to mothers and ensure that their children’s nutrition is being monitored”

Smile Train India does 39,000 cleft lip/palate surgeries every year. It has supported over six lakh surgeries in the 19 years of its presence in India. The high impact is due to the fact that it works closely with state government health departments as well as other government agencies to spread the message that cleft lip/palate poses a serious health threat.

Dr Anjali Saple, a plastic surgeon and Smile Train partner from Seven Hills Hospital, Vishakhapatnam says, “While practicing in Mumbai, I had seen several cleft patients come to the hospital in search of treatment. Unfortunately, insurance did not cover the surgery, and most parents returned home empty-handed as they were unable to afford the cost. I was on the lookout for an organisation that would connect underprivileged cleft patients to doctors like me. I love Smile Train’s work because I thought they did a wonderful job of empowering local doctors, whether it was through quality equipment or the wherewithal to conduct camps”.

Fashion blogger and stylist Tanya Mittal credits Smile Train for changing her life. “21 years ago, I was born with a cleft lip. Between the ages of 18 and 19, I had three cleft surgeries supported by Smile Train to correct my nose and lips. This gave me the confidence to pursue a career that I’d always been passionate about”.

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