‘A child with cleft dies 100 deaths a day’

The Smile Train charity aims to remove the cleft that comes in the way of a smile.

Rahul Kumar/ OneWorld South Asia

The Smile Train, a distinct global charity, aims to remove the cleft that comes in the way of a smile. Its mandate is to treat cleft lips and cleft palates to help people live a fuller life—one of dignity and happiness. Rahul Kumar speaks to Satish Kalra, Regional Director, The Smile Train, South Asia. OWSA:How did you choose this particular intervention? Kalra: There are good reasons for that. Most of us came from business backgrounds and business people are focused on returns on investment (ROI). We have spent the whole of our working life explaining to shareholders that you will get a good return on investment. We had long business careers before we got into this and we could not find anything else which could give so much benefit for such a small investment. With just $250, to change the life of a child and change the life of a family, you make such a dramatic impact. The second reason was that any birth-defect is a tragedy. Ask a family where a child is born with the Down syndrome, Cerebral Palsy or anything like this. Unfortunately, medical science doesn’t have answer to these birth-defects. These are huge tragedies but medical science can do nothing. Now, here’s a birth-defect that can be completely corrected and yet isn’t corrected because people don’t have the money. It is a correctable birth-defect and yet it’s not corrected. So, we thought that this is something that deserves our attention. The third reason was that most of the governments do not even regard cleft as a disability. A lot of people will tell you that it is a cosmetic problem; a lot of doctors consider it a waste of time. They say that no child ever dies because of cleft, which is true. No child ever died of cleft but if you see the world through the eyes of a cleft child, then such a child dies 100 deaths a day. Therefore, we chose something which was life-changing and which could make impact with a small investment and something which in other people’s eyes was not even a problem. OWSA: You want to say that there is social and psychological impact due to the surgery? Kalra: Yes, a child born like this grows where everybody looks at him with pity. Suddenly, he gets a surgery and becomes normal. There is a tremendous impact. Look at it from a mother’s point of view. A lot of these mothers are children themselves. They are just 18 or 19 years old when they get married and a year later they have a child. Now when a child with cleft is put into the arms of a mother, imagine, how would she react? The mother starts screaming. Why me? What went wrong? In our society, the mother-in-law blames the daughter-in-law. They will say that my son is perfectly alright, it’s you who is cursed and who has brought the bad luck here. OWSA: Is it connected to poverty? Kalra: Absolutely, the whole thing is connected to poverty and has a lot to do with illiteracy and ignorance also. Cleft is not a medical problem, it is an economic problem. The incidence of cleft births is the same in the US as it is in Bihar, but you will never see anybody with a cleft in America. It is because they have the money; the child gets operated and enjoys a normal life. But here first people don’t know whether it can be corrected; second, even if they know it can be corrected it costs a lot of money, so it does not get corrected. So, it’s a problem of poverty. OWSA: Do you want the government to consider it as a disability? Kalra: How will it change anything? We have a million laws in this country but no justice. Imagine if there is a law declaring that nobody can be poor, will poverty be wiped out? OWSA: But supposing that the government does accept it, then probably other organisations and people can help contribute to its downfall. Kalra: Nothing will change. I am saying that most governments don’t even recognize it as a disability. Even if they recognise it as a disability, it won’t change anything. The only thing is, some of them will get a 50 per cent concession while travelling in the train. Go to any government official and he will tell you with justification that this is not our biggest medical problem, this is not our priority—our problem is clean water, diarrhoea, dysentery, malaria and infant malnutrition.. OWSA: Tell me a bit about your work. Kalra: We generate all our funding in developed countries and spend all the money in less developed countries or underdeveloped countries. The India programme is the largest programme of Smile Train anywhere in the world. We started in year 2000 and from then we have sponsored over three lakh surgeries across India. This year we expect to sponsor over 50,000. We have 170 identified hospitals where surgeries are carried out. Every day we have patients walking, they are tested and they are checked. They are given an appointment and they come and get their surgeries done. They are weighed and their stitches are removed. All this is done without the people having to pay a single rupee. OWSA: How does The Smile Train reach out to people? Kalra: We don’t have the resources to reach out to 120 crore people. So we reach out through our partners, the media and voluntary organisations. We rely heavily on the media. Every time I meet a person from the media, I tell them run a story which talks about clefts and that every case can be operated upon. We work with voluntary organisations such as Rotary, Lions and others. Many state governments support our programmes and spread awareness through aanganwaadi workers. Even the primary health centers sensitise people. But the most important way of getting people in, is through word of mouth—parents who have had their child operated. Every family with a cleft child knows at least 2-3 families with a cleft child. When a cleft child is born in a village, the midwife usually says, “there is one in the neighbouring village also.” People also do not believe that it can be done for free. But when a parent of a cleft child who was operated, goes back and says it was actually free, then they will believe him. They will not believe any social worker or any one, so they come. So each patient that goes out generates three more.