|MISSION IMPOSSIBLE MADE POSSIBLE
|Year : 2014 | Volume
| Issue : 2 | Page : 100-103
Cleft lips and palates: A societal perspective
Chief Programs Officer, SmileTrain, New York, USA
|Date of Web Publication||2-Aug-2014|
Panchsheel Park, New Delhi - 110 017, India
Source of Support: None, Conflict of Interest: None
The congenital anomaly of cleft lips and palates is probably more misunderstood than most. The attitude of National Governments, medical professionals and society at large often ranges from unsympathetic to callous. Luckily this is changing and bringing more cleft affected people back into the mainstream than at any other time in history. But there's still a long way to go.
Keywords: Attitudes, clefts, society
|How to cite this article:|
Kalra S. Cleft lips and palates: A societal perspective. J Cleft Lip Palate Craniofac Anomal 2014;1:100-3
| Birth Defects|| |
Clefts of the lip and palate are obviously not the most serious birth defect among humans. Millions of parents in the world are devastated each year when they learn their bundle of joy has a serious medical problem, many of which medical science can do little about. Some of them - like congenital heart diseases (CHD) - are life threatening, but not all. Others impact - in varying degrees - the quality of life the child will live, and one can only imagine the agony of parents as they watch their child deprived of the simple joys, choices and opportunities that every human being should be entitled to.
Luckily some of these 'problems' have 'solutions' - again, like CHD - which if detected early can be corrected surgically allowing the child to grow up normally. Another one with a 'surgical solutions' is that of clefts - but with a big difference! Many don't even regard this as a 'problem'!
| Really|| |
They are probably right; it isn't really a 'problem.' If you have the money.
Nobody exactly knows what causes clefts, but empirical evidence suggests the incidence depends more on race than economic status. For instance, the number of clefts per thousand live births is the same in, say, California as it is in Bihar. Clearly far more children are born with clefts in Bihar, but more importantly, all those born in California get surgically corrected - often in the first week - and grow up normally. The surgery isn't cheap but with medical insurance and the state paying that's hardly an issue. Clefts, as one surgeon put it, is more a financial problem than a medical one.
| Cleft Repairs|| |
Surgical correction of clefts has actually been attempted for centuries.
According to an excellently researched paper by Bhattacharya et al.,  there lived a young man by the name of Wey Young-Chi , in the city of Jen in the province of Hupeh in China who was born with a cleft lip. He was operated at the age of 18, and after successful surgery, recruited into the Imperial army where he rose rapidly, greatly impressing General Lin-Yu by helping to suppress a revolt. In the course of time, Wey Young-Chi himself rose to the rank of General and later the Governor of the Province of Yee, eventually becoming the Governor General of six provinces. Like millions who've had their cleft corrected after him, Wey Young-Chi always maintained he would never have achieved so much if his cleft lip had not been repaired. 
Plastic surgery probably owes its birth as a specialty to armed human conflict, - especially World War II - when a large number of young men required surgical reconstruction of body parts following battlefield trauma. Once the Great War was over, with newly acquired experience and more time now available, attention shifted to other bodily defects that could perhaps also be corrected through surgery. The 50's were a golden period for development of cleft surgical techniques. A relatively crude technique developed and documented by Werner H. Hagerdon of Magdeburg who had studied under von Langenbeck almost a century earlier was modified by Le Mesurier,  then by Tennison in 1952  and Randall in 1959. 
However, one of the most interesting innovations came about by happenstance! A young American plastic surgeon, Ralph Millard, found himself in a military hospital in Korea in the late 50's. Armistice had been announced, the fighting virtually stopped (technically the war never ended; North and South Korea are still at war!) and there was a sharp drop in cases of battlefield injuries that used to keep him busy.
Hence he started looking at children with cleft lips that came in since there were very few civilian hospitals that could treat them. He studied the tissue alignment, experimented around and developed a new technique - rotation - advancement - that would eventually become the gold standard!
After the 1950's the cosmetic results of cleft surgeries except for the nose were much improved. However, speech and the cleft palate remained an enigma which continued to frustrate surgeons. By the turn of the century the universal acceptance of the radical dissection of the levator and the progress made in newer methods of doing a pharyngoplasty created a quantum leap in obtaining uniformly intelligible speech in these children. A further improvement has also taken place dealing with the cleft nose.
However, perfection still eludes the craftsman, and according to Hirji Adenwalla, the éminence grise of cleft surgeries, "this love affair is never consummated and therefore never dies."
| Cleft Treatment Through Charity|| |
However, the first person to realize the emotional potential of clefts was another American. A dentist, also a Board Certified Plastic Surgeon William McGee who enjoyed traveling with his young bride Kathy (an OR nurse) to South America, and often brought back 'before' and 'after' pictures of a few cleft kids he operated while on vacation.
The impact on his audiences was stunning; they had never seen such a dramatically visible difference immediately after surgery. This made the young couple sit back and think… and they started the first cleft charity - Operation Smile - that took a small group of American doctors to the Philippines in 1983, operated some cleft affected children and brought back powerful 'before' and 'after' photos that could melt the stoniest heart. They did… and also opened a lot purse strings, which kept them going and growing.
The next big turning point in charitable cleft work had to wait 16 long years - when again two Americans - Charles Wang and Brian Mullaney - who had been associated with Operation Smile realized that taking American doctors with their equipment was perhaps not the most cost efficient way. It would be simpler and a lot cheaper if these surgeries were carried out by local doctors. A new player - Smile Train - was born.
In hindsight this may sound obvious but it was nothing short of revolutionary!
Working with local doctors meant treatment was available 365 days a year, not just when the American Missions came, it created a sense of ownership and pride among local professionals and it cost a fraction of what it required to fly personnel and equipment around the world. That meant every donation dollar could now support 10 times the number of surgeries!
To say this "model" succeeded would be a monumental understatement! By one estimate over 170,000 children are born globally with cleft lips and/or palates every year. Compared with just a few thousands treated through missions, the Smile Train model offered treatment to tens of thousands of such patients. In the 15 years since inception Smile Train has supported over 10 lakhs safe, quality and free reconstructive surgeries at 1100 carefully selected partner hospitals in 75+ of the poorest countries of the world.
The India program is by far the largest, accounting for over 40% of all sponsored surgeries (through 170 partner hospitals that make up just 15% of the total).
With links established to local doctors and hospitals, Smile Train has also focused on training of local medical professionals and up gradation of hospitals and introduction of advanced systems, practices and protocols that have significantly raised medical standards to benefit the society at large, not just cleft patients.
| 'Problems' of Success|| |
But 'success' if it can be so termed, comes with its own issue and problems! Let me highlight three:
- Academicians in teaching hospitals often 'accuse' Smile Train of luring away cleft patients leaving very few for training of plastic surgery residents. While Smile Train consciously tries to make teaching hospitals its 'treatment partners,' this is not always possible. The most common reason being the existence of other nonteaching hospitals in the same city that can offer better cleft care, but often bureaucracy, obduracy ("why should we offer our results for scrutiny?"), apathy towards clefts and poor safety standards (yes, that can happen!) also preclude those. But any teaching hospital is always welcome to send residents for cleft training to any Smile Train centre, any time.
- Smile Train, some tell us is "only focused on numbers." Nothing could be farther from the truth; safety has and shall always be priority #1. No child's life should ever be put at unnecessary risk for the sake of an elective surgery. And 'numbers' are a double-edged sword; clearly the more surgeries a surgeon performs the better he or she gets, but doing 'too many' may well involve cutting of corners and compromising quality. What's needed is an optimal 'balance' and Smile Train continually strives to achieve that. It is the only charity in the world that actually tracks and monitors (peer rated) quality outcomes of surgeons.
- Given the process of rigorous screening and credentialing of 'partner hospitals' and surgeons-and the high degree of credibility built through years of fairness and transparency - many more want to come 'on board.' In a country of scarce medical resources this should be very welcome, except most of these come from cities that already have well established and smoothly functioning centers. Adding more doesn't bring in new patients; it only divides up numbers that could bring all below the critical mass required for running a good cleft center. Sad, to say, many of those showing eagerness to join are not really serious about cleft work; all they want is a "Smile Train Seal" that will bolster their standing in the market and the medical fraternity.
| Role of the State|| |
Few governments even realize that clefts are a health issue. A healthy society - free of disease and disability is a productive society. "Health" forms an integral part of the Millennium Development Goals, but what is often overlooked that there are two aspects to "health" - preventive and curative.
The former is obvious, but the latter often gets overlooked. The curative aspect also has two categories: Medical and surgical. The role of surgical cures for birth defects like CHD is well-documented. Cleft lips and palates are an equally deserving 'problem' that cry out for attention - without always getting it.
A child with a corrected cleft lip and palate goes to school, gets an education, learns a trade, earns, spends, raises a family and contributes to the economic well-being of the society. Hardly rocket science! A leading American university carried out an "economic impact" study and concluded a person who gets a cleft repaired - depending on when and where it was done - adds to the gross domestic product a sum that's 40-50 times the total cost of treatment.
| Cleft Treatment in India|| |
Closer home, in India the cleft scene has changed dramatically over the last 14 years. It is estimated that 35,000 children are born each year with clefts in India, but barely 5000 were actually receiving any form of surgical correction at the turn of the century. Today the figure is closer to 60,000!
However, it's easy to become complacent; the task ahead is still daunting as highlighted by two examples from India:
- First, a recent pilot study carried out in four states through Smile Train Express the digital database of cleft surgeries maintained by Smile Train, looked at where the patients live and came from, not where they were operated. Turned out over 80% patients came from a handful of districts around the cities where free surgeries are available! With a median age at the first primary surgery dropping sharply and surgery numbers plateauing out, the conclusion was "there are no more untreated cleft patients." Wrong. There are huge swathes of India that have still not been reached.
- Second, a gender analysis of patients coming in for cleft surgeries - also from Smile Train Express - has shown 66% are males. There are some (unsubstantiated) views that males have a higher propensity for clefts, but even the most ardent proponent of this theory would probably put the sex ratio at around 52:48. A preference for the male child is well-known; what's not so obvious is a large number of baby girls never show up for cleft repairs. According to a very senior cleft surgeon, they are deliberately "wasted away" and allowed to die. Who would have thought clefts being a cause of infant mortality?
| Managing Cleft Treatment|| |
Fortunately as surgery numbers have grown dramatically, most medical professionals in India today understand and acknowledge the importance of the team approach. Just "plugging holes" is not what a cleft child needs to re integrate and take his or her rightful place in society, and other specialties and services that aid rehabilitation are gaining momentum.
The role of speech and orthodontic professionals as members of the cleft team are too well documented to warrant repetition, but there are many others that play equally important roles. For example, the outreach workers and NGOs that spread the message and bring in patients, the pediatrician and anesthesiologists who ensure safety, the overworked, underappreciated and underpaid nurses, the counselors who hold the family's hand and guide them, the book-keepers and administrators who maintain records. They all need to be acknowledged and thanked.
| The Future…|| |
Smile Train was founded on two basic premises: First, to deliver a social benefit you need good management more than good intentions, and second, there are far too many problems facing mankind; instead of trying to solve all, focus on one and make a difference. This "model" may well work for other medical conditions and anomalies - and nothing would give greater joy to Smile Train than sharing this and see it replicated. Hopefully, there'll be some takers!
Coming back to the story of clefts: The battle continues! Today more children born with clefts are being treated than at any time in human history. There's a wider awareness of the 'problem' and some societies (districts, states, even countries) are even talking of becoming 'cleft free'! (the definition of 'cleft free' being that no child born with a cleft crosses the appropriate age without receiving corrective surgery).
But barring incremental improvements, there've been no dramatic changes in the techniques for cleft repairs since the golden period of the mid 50's. Are there nonsurgical options? Serious researchers are looking at the possibility of using stem cells to restart in vivo the growth of tissue that failed to complete in utero. Others are looking at in situ three-dimensional bio printing of missing tissue, suitably vascularized and innervated to eliminate the need for surgery!
Even as these developments take place, sadly there is still a significant constituency of policy makers, opinion leaders and even responsible medical professionals who remain skeptical about clefts; they maintain this is a pure cosmetic problem! "You must be out of your mind if you think this is the most serious medical problem facing our country," "No child ever died of a cleft" are statements one still hears with a regularity that's frightening.
If only they could see the world through the eyes of a child growing up with an untreated cleft!
| Acknowledgments|| |
The author freely and gratefully acknowledges material, guidance, carefully thought out opinions and experience based wisdom shared by a large number of medical professionals too numerous to be named individually.
| References|| |
|1.||Bhattacharya S, Khanna V, Kohli R. Cleft lip: The historical perspective. Indian J Plast Surg 2009;42 Suppl:S4-8. |
|2.||Dorrance GM. The Operative Story of Cleft Palate. Philadelphia: Saunders; 1933. |
|3.||Morse WM. Chinese Medicine. New York: Hoeber; 1934. p. 129. |
|4.||Wu LT, KC Wong. History of Chinese Medicine. Shanghai: Mercury Press; 1936. |
|5.||Le Mesurier AB. A method of cutting and suturing the lip in the treatment of complete unilateral clefts. Plast Reconstr Surg (1946) 1949;4:1-12. |
|6.||Tennison CW. The repair of the unilateral cleft lip by the stencil method. Plast Reconstr Surg (1946) 1952;9:115-20. |
|7.||Randall P. A triangular flap operation for the primary repair of unilateral clefts of the lip. Plast Reconstr Surg Transplant Bull 1959;23:331-47. |