Set up to bring smiles to the faces of children born with cleft lips and palates, the Smile Train, a United States-based non-governmental organisation, operates in 25 countries.
A CHILD's grin is always a joy forever. To elicit a smile or a giggle from an infant, often one has to move close to its face, make some sounds, or babble. It is this initial interaction that makes a child feel wanted, and it is perhaps an important step in making the child a social being. But a cleft lip problem, the most common birth defect, changes all this. It distorts a child's face, sometimes making people turn their heads away. Even the parents of some such children are reluctant to let others me et them. Shunned by practically everyone, the children are doomed to a life of social isolation and deprivation, apart from medical complications.
It may not be the end of life, but for children with the cleft lip problem there is no life at all. The problem goes beyond the obvious disfigurement of the face, and extends to shame, stigma, social ostracism and medical impairments that affect speech, hearing and teeth formation.
In India, over 35,000 children are born with cleft lips or palates every year. Although the problem can be corrected easily, hardly 8,000 of them receive treatment. This is because of ignorance or the lack of resources to get the corrective treatment don e. Governments give low priority to dealing with the problem as it is not fatal.
A cleft lip is caused because by the failure of tissues and bones to fuse and close in the foetal stage. Clefts are of three types - an opening in the lip, the roof of the mouth (hard palate), and the soft tissue at the back of the mouth (soft palate). T hese openings usually close between the fourth and 12th week of pregnancy. But when they fail to close - one in every 700 cases -- it results in a cleft lip / palate problem. The incidence of cleft lip, however, differs substantially among different grou ps. For instance, it occurs more among Asians (one in every 350 births) and certain groups of native Americans than in other communities.
A cleft lip occurs in the fourth and sixth weeks of pregnancy when the portions of the upper lip do not fuse, creating an opening in the lip between the mouth and the nose. A cleft palate occurs between the eighth and 12th week of pregnancy when the stru ctures between the mouth and the nose do not fuse, causing an opening in the roof of the mouth. A child can be born with a cleft lip, a cleft palate, or both. While 25 per cent of the affected children have a cleft lip or palate, 50 per cent have both. M ost children with a cleft lip also have a deformed nose.
While the damage is done in the foetus, it is easily correctable after birth - it takes a surgical procedure that lasts 45 minutes. Yet, millions of children across the world suffer the trauma of cleft lips.
It is to rectify this anomaly that the Smile Train, a United States-based non-profit non-governmental organisation, was set up in 1998. Its sole aim is to bring smiles back to the faces of children with cleft lips. The Smile Train is supported by major c orporate houses, politicians, film and sport personalities and the medical fraternity from all over the world. Among its well known donors are Charles B. Wang (chairman and Chief Executive Officer of Computer Associates International, who donated an init ial sum of $10 million), Bill Gates and Belinda Gates (chairman and CEO of Microsoft Corporation, who donated over $1 million), George W. Bush (former U.S. President), Gen. Colin L. Powell (who will be the Secretary of State in the incoming George Bush a dministration), Tom Brokaw (anchor and Managing Editor of NBC Nightly News) and Candice Bergen (Hollywood actress). The name the Smile Train was chosen because the NGO delivers smiles around the world carrying with it a number of "compartments" such as t reatment, medical training, research, and most important, hope for children with the problem of clefts lip/palates.
The Smile Train delivers smiles in 23 countries, most of them poor. Its partners include the American Cleft Palate-Craniofacial Association, the Australian Craniofacial Association, the China Charity Federation, Johns Hopkins University, New York Univers ity Medical Centre, University of Texas Southwestern Medical Centre, Stanford University, University of Pittsburg, Interplast Incorporated, University of North Carolina and Yale University.
Says the Smile Train's founder-director Charles B. Wang, who is the driving force behind the project: "There are many problems in the world we cannot solve. But the cleft problem can be annihilated from the face of the earth, almost by magic in less than 45 minutes and at very reasonable cost. It is my life's mission to put back the smile on the young faces and give them a new life." There is no other medical procedure in the world that delivers such dramatic and permanent benefits as that for clefts, h e said. According to Charles Wang, there is no reason why clefts should exist at all.
With Charles Wang taking care of all the administrative costs of the programme (over 30 per cent of the total cost), all donations go directly for surgical procedures.
The Smile Train focusses on three areas - providing free surgical treatment for the poor anywhere in the world, giving free training for doctors and para-medics on the treatment and management of cleft lip/palates, and conducting research. The programme' s guiding principle is empowering local health care providers to treat cleft lips/palates. Thus, the NGO provides free education and training for the local medical community in the countries it works in. This is both cheap and effective. Charles Wang say s: "In the long term, training the local medical team is the only realistic approach to providing surgery for the millions of children in the world who are waiting for it."
Last July, the Smile Train entered India and set up five centres - in Mangalore (in collaboration with the A.B. Shetty Memorial Institute for Dental Clinic), Thrissur (with the Charles Pinto Centre for Cleft Lip and Palate), Hyderabad (with the SHARE Med ical Centre), Chennai (with the Sri Ramachandra Medical College and Hospitals, or SRMCH) and Mumbai (with the Impact India Foundation). Only the Chennai centre is functional now. Others will start work soon.
In Chennai, the Smile Train conducted the first set of surgical procedures in November at the SRMCH. According to the Smile Train's managing director in India, Satish Kalra, the NGO plans to set up at least 10 centres in the country. The goal is to condu ct 3,000 operations in the first year and eradicate the problems of cleft lip/palate in children under five in the next five years.
The Smile Train has set stringent quality norms for hospitals with which it collaborates. It insists on multi-disciplinary, state-of-the-art treatment. The cleft lip and palate treatment team consists of plastic surgeons, dentists, orthodontists, speech pathologists, otolaryngologists, psychologists and anesthesiologists.
With a comprehensive multi-disciplinary cleft lip and palate treatment centre in place since 1997, the SRMCH has been conducting about 100 surgical procedures a year - 70 per cent of them free and 30 per cent subsidised. The Director of its Cleft Centre, Dr. Jyotsna Murthy, says: "The Smile Train programme gives a fillip to our centre, which would now step up operations and offer a range of rehabilitation therapy." The hospital also plans to provide a fellowship in cleft management for plastic surgeons.
To ensure early detection of the problem, the Smile Train has an out-reach programme in which a medical team would go to the villages, identify children with the cleft lip problem and bring them to the centre for treatment. It will also offer an incentiv e of Rs.100 to mid-wives who report to the SRMCH the birth of a child with a cleft problem and Rs.500 if she brings the child to the hospital for treatment. Parents of the children will be reimbursed the cost of the travel to the hospital.
According to the Chief Executive Director of the SRMCH Radha Venkatachalam, while the Smile Train has committed to reimbursing the hospital all surgery costs (which range from Rs.10,000 to Rs. 20,000 per operation), the costs of medicine, hospital stay, food and follow-up treatment would be borne by the hospital.
The search for the cause of cleft lip and palate has been a long and frustrating process for researchers and scientists around the world. Although scientists have determined that the problem occurs early in pregnancy, the precise cause is not clear. Acco rding to Dr. Jyotsna Murthy, the problem is caused by a combination of genetic and environmental factors. Maternal alcohol abuse and smoking, some types of medication, high doses of certain vitamins and malnutrition increases the risk of cleft lips. Whil e little is known about how to prevent cleft lips/palates, a recent study has shown that taking multi-vitamins containing folic acid before conception and during the first two months of pregnancy may help.
To improve the quality of the programme, the Smile Train offers a one-year fellowship to enable doctors travel around the world and enhance their knowledge about the problem and the skills to treat it. Says Charles Wang: "Our aim is to work ourselves out . Treat the existing problem and, at the same time, prevent it." Thus, the Smile Train supplies equipment free to hospitals which cannot afford them and bears the cost of all surgical procedures. It also invests heavily in research to find ways of preven ting the problem.
The Smile Train supports a range of research efforts throughout the world. The projects include investigating the role of specific genes (recently, one gene, UFD1, was identified as affecting chromosome 22, which is responsible for cleft lips), linkages between chromosomes, the impact of pesticide exposure, prenatal care and possible preventive agents. According to Dr. Jyotsna Murthy, cleft lips and palates mostly occur among the poor in India largely owing to poor maternal health. While cleft surgery c an be performed at any age, it is best done before the child completes one year.
Charles Wang, who has spent considerable time and resources to develop hi-tech facilities to treat the problem, says: "There is nothing more powerful, more exciting and more rewarding than using technology to change lives." The state-of-the-art facility, which can be used by doctors all over the world, includes a virtual laboratory (to help doctors practise before the actual surgery) and an interactive cleft curriculum (a comprehensive interactive multimedia teaching tool, which can be accessed through the Internet, CD-ROMs and digital video disks). The Smile Train also has a cleft research laboratory in New York University Medical School which focusses on in-vivo animal models and in-vitro organ and cell culture.
According to Satish Kalra, the Smile train has earmarked between Rs. 2.5 crores and Rs.3 crores for India for the next six months and intends to perform at least 3,000 surgical procedures in the first year. The SRMCH is planning 500 surgical procedures i n the next year. Satish Kalra said: "This is only the beginning in India. We do not set targets, but work towards making ourselves jobless as soon as possible."