Journal of Cleft Lip Palate and Craniofacial Anomalies

: 2018  |  Volume : 5  |  Issue : 2  |  Page : 60--61

Cleft care in India: Current scenario and future directions

Divya Narain Upadhyaya 
 Department of Plastic Surgery, King George Medical University, Lucknow, Uttar Pradesh, India

Correspondence Address:
Dr. Divya Narain Upadhyaya
Department of Plastic Surgery, King George Medical University, Lucknow - 226 003, Uttar Pradesh

How to cite this article:
Upadhyaya DN. Cleft care in India: Current scenario and future directions.J Cleft Lip Palate Craniofac Anomal 2018;5:60-61

How to cite this URL:
Upadhyaya DN. Cleft care in India: Current scenario and future directions. J Cleft Lip Palate Craniofac Anomal [serial online] 2018 [cited 2021 Jun 17 ];5:60-61
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Full Text

The birth of a child with a facial cleft is a tragic incident for the family that the child is born in. Not only is the family devastated by the apparent facial deformity, but also worried about several other issues such as care of the child, the treatment options, and the social impact that the cleft will have for the child and for the family. It is in this traumatized state of mind that they first approach the doctor with their questions regarding the cleft and its treatment. A gentle, wise counsel can almost always allay the fears of the parents and prepare them for what may be a lifelong course of cleft management. Although the cleft lip surgery itself takes a little less than an hour to complete, yet the holistic management of cleft, depending on the severity of the clefting process, of course, is a long process and needs several procedures, prolonged follow-up, and interdisciplinary management. For the parents, this can be exhausting, unless they are properly counseled and well prepared for this in advance. This is where the role of public relation officers or counselors comes in. The parents need to be able to talk to someone, in a relaxed environment, who can address their queries, chart out the future course for them, direct them to the next step, and generally, put them at ease. This is possible only in strictly professional cleft centers, where interdisciplinary quality care and professional patient handling go hand in hand. Fortunately, the number of such centers in India is increasing by the year. The last decade and half has seen a major change in the area of cleft care in India. A major portion of the credit must be given to the blossoming of several cleft charities in India. Since the turn of the century, cleft care has slowly, but surely, evolved for the better in India.

Not 15 years ago, clefts were managed only in major plastic surgery departments of large government hospitals in India. The slow mushrooming of these charities has seen the action move from government institutions to private players. The number of private cleft centers providing at least basic cleft surgeries has boomed in India with several specialties chipping in. The involvement of more and more specialties has meant better care for the cleft patient and increasing standards of care. Furthermore, an increase in the number of cleft centers has meant greater penetration of cleft surgeons and allied specialties with more patients now having access to cleft care than before. The number of patients being offered cleft surgery has been increasing every year, and how? Cleft centers are aggressively marketing, publicizing, and reaching out to patients. Outreach programs and medical missions and health melas have meant a greater awareness in the public about the condition and the options of treatment available for them. Moreover, this has caused the number of patients also to increase in proportion to the number of cleft centers blossoming in India.

The modus operandi of these cleft charities, operating currently in India, varies and has been a matter of hot debate. However, what is not contested is that all the organizations working for cleft patients are reaching out to more and more patients and delivering care to them, which would not have been possible without these groups. Smile Train and Operation Smile are among the largest of these cleft charities that currently operate in India. Other bodies of note are Deutsche Cleft, Mission Smile, and Lifeline Express, etc. All these charities have, undoubtedly, increased the penetration of cleft care to the last person in India's villages. Moreover, to crown it all, this cleft care, except in some cases, is mostly delivered free to the patient. Thus, more and more children are being treated free of cost and with reasonable expertise.

However, like all things under the sun, there is a dark underbelly to this too. While most of the centers do provide basic cleft care in terms of cleft lip and palate surgery, free of cost, and with reasonable expertise to the patients, there are still very few centers that provide comprehensive cleft care. The motto of the last decade, as far as cleft care is concerned, has been to reach the last patient of cleft lip and palate and to be able to provide reasonable and safe surgery to him or her. However, this is no longer sufficient. The last decade has prepared cleft surgeons in India sufficiently, to take cleft care to the next level. The time is coming for us to raise the benchmark from safe surgery to comprehensive care. All centers must integrate interdisciplinary care to be able to deliver the best to their patients, in terms of alveolar bone grafting, revision surgeries, orthodontics and orthognathic surgery, cleft rhinoplasty, and speech support. Unless we are able to do this, we would be doing a great injustice to our patients. We must build a hierarchical network of cleft centers that can provide a variety of cleft support in a cascading manner. Level I cleft centers may provide basic cleft care, Level II cleft centers may provide revision surgeries and alveolar bone grafting and orthodontia facilities, and Level III cleft centers may provide orthognathic surgery, cleft rhinoplasty, and speech support, etc. In addition, complicated facial clefts may be referred to the Level III center at the first encounter only without the patient going through the whole cascade first. Such organization of cleft centers, depending on the care levels available there, must come from within our own organization. This is the next level we must migrate to. This is our agenda for the next decade!

Another issue that needs some serious addressing has been the training in clefts. This has hitherto been the exclusive domain of the government teaching institutions. This scenario too has changed in the last decade. With more and more private players and small cleft centers with aggressive marketing policies coming into the cleft scenario in India, the role of the large government institutions has been relegated to that of mute spectators. The flow of cleft cases reaching these teaching hospitals has steadily decreased and has now nearly completely ceased. This is alarming since the trainees do not get to see enough cleft lip/palate repairs in their training period and have absolutely no idea about comprehensive cleft care. This is also dangerous since this does not prepare our next generation of surgeons to take on the mantle from us. This lack of training has to be addressed, even if it means the government and private players working in tandem with each other. The next generation of surgeons has to be trained and educated in cleft care. A series of training programs with various levels needs to be decided and put into place for residents and trainees to pursue, namely, basic cleft course, graduate cleft course, and advanced cleft course. Centers with potential for imparting cleft training must be identified and indexed, a register made and teaching hospitals notified of the facilities for training available. A rotation to an advanced cleft center must be made mandatory during the residency program to ensure that the residents get enough exposure to comprehensive cleft care and do not pass out without having seen even one cleft lip or palate operated. This is a problem, which, if not addressed in a timely manner, has the potential to wreck the standards of cleft care that we are so lovingly nourishing now. All those involved in cleft care must come together and deliberate how these issues may be addressed to the satisfaction of all concerned, so that we can go from strength to strength and continue to provide excellent services of world standards to our cleft patients in India.