Smile Train puts the smile back on the faces of children with cleft lip & palate

July is marked as National Cleft and Craniofacial Awareness and Prevention Month in the United States. Thousands of babies, children, teens and adults in the U.S. and other parts of the world including India are affected by cleft and craniofacial conditions each year. Many of them go untreated when it can be corrected. Helping to change this scenario is Smile Train.

All parents love to see their children smile. For Laxmi, her daughter Anshu‘s smile is extra special. Anshu, who lives in Haryana, a state in north India, was born with a cleft lip and palate. Doctors told Laxmi it could be treated but she could not afford the surgery.

Hope finally dawned when a representative at a local plastic surgery centre told Laxmi about Smile Train‘s free cleft treatment programme. That changed their lives. “Her first smile after surgery is etched in our memories forever. Anshu’s smile was always beautiful, but this one was special”, recalls Laxmi.

Cleft palate is a common birth condition

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.

However, in poorer countries, the condition goes untreated due to lack of awareness, poor access, and high cost. It is the superstitions, says Mamta Carroll, Vice President and Regional Director, Asia, Smile Train, that are hardest to counter.

One in 700 babies are born with a cleft lip/or palate globally. In India, 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 & Regional Director, Asia, Smile Train

Things are much worse for baby girls. Male children get treatment earlier. “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”, adds Carroll.

Smile Train India works at multiple levels – awareness, education and counselling. They work with families as well as village doctors and primary health centres. “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”.

Smile Train supports families in poor countries

Smile Train India also 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, Varanasi, which is among the 150 partner hospitals that Smile Train works closely with in India. “People from underserved socio-economic backgrounds are often unable to make hospital visits. Smile Train supports parents by reimbursing their transport and food costs, and this goes a long way in motivating them”.

Dr Anjali Saple, is a plastic surgeon and Smile Train partner at Seven Hills Hospital, Vishakhapatnam. “Insurance does not cover the surgery and most parents return disappointed as they are unable to afford the cost. I was on the lookout for an organisation that would connect underprivileged cleft patients to doctors like me. Smile Train has done a wonderful job of empowering local doctors, whether it’s through quality equipment or wherewithal to conduct camps”.

Fashion blogger and stylist Tanya Mittal credits Smile Train for changing her life. “Twenty-one 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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