The challenges in cleft lip and palate care.

Clefts are a deformity that can cause numerous and wide ranging health problems. It necessitates complicated and comprehensive treatment over the course of childhood in order to be properly amended. It may be perceived to be a life-threatening abnormality and there may be little awareness of the fact that clefts can be surgically repaired with considerable success both aesthetically and functionally. Let’s make an effort to address the challenges faced in Critical elements of cleft lip and palate care. The Indian sub-continent remains one of the most populous areas of the world with an estimated population of 1.1 billion in India alone. This yields an estimated 24.5 million births per year and the birth prevalence of clefts is somewhere between 27,000 and 33,000 clefts per year. Inequalities exist, both in access to and quality of cleft care with distinct differences in urban versus rural access and over the years the accumulation of unrepaired clefts of the lip and palate make this a significant health care problem in India.

In recent years, the situation has been significantly improved through the intervention of various Non-Governmental Organisations Worldwide participating in primary surgical repair programmes. The cause of clefts is multi factorial with both genetic and environmental input and intensive research efforts have yielded significant advances in recent years facilitated by molecular technologies in the genetic field. India has tremendous potential to contribute by virtue of improving research expertise and a population that has genetic, cultural and socio-economic diversity.

World Health Organisation (WHO) has recognised that non-communicable diseases, including birth defects cause significant infant mortality and childhood morbidity and have included cleft lip and palate in their Global Burden of Disease (GBD) initiative. The lack of knowledge and resources results in unacceptable delays in seeking and receiving adequate medical care, due to which, many infants with OFC die of malnutrition or infection. This grim situation is further compounded by failure of healthcare authorities to recognize craniofacial anomalies as a notifiable disease.

Even in large hospitals that do employ specialists that can work with cleft patients, it is uncommon to have e any protocol developed for determining the different steps to be taken with which patients and at what ages. The focus has historically been only on repairing the split in the lip or bone, with very little attention given to speech, dental, hearing, or nasal breathing difficulties. This mentality, in combination with the vast disparity between the number of patients in need of care and the number of well-trained personnel, as well as the lack of infrastructure and financial resources, has created a situation in India in which the multidimensional cleft teams that are ubiquitous in other countries rarely exist and even more rarely are accessible to those who require their attentions.

The goals of treatment for the child with a cleft lip/ palate are:

• Repair the birth defect (lip, palate, nose)

• Achieve normal speech, language and hearing

• Achieve functional dental occlusion and good dental health

• Optimize psychosocial and developmental outcomes

• Minimize costs of treatment

• Facilitate ethically sound, family-centered, culturally sensitive care.

Seven key themes are important for achieving these goals:

• Early assessment and intervention is imperative and should begin in the new-born period with referral to a Cleft Lip/Palate Team. When cleft lip/palate is diagnosed prenatally referral to a team should be offered.

• An interdisciplinary cleft lip/palate team is needed because cleft lip/palate outcomes are in surgical, speech, hearing, dental, psychosocial and cognitive domains. • Providers with training and expertise in cleft lip/ palate care are needed because of the complexity of treatment interventions.

• Continuity of care is essential because outcomes are measured throughout the child’s life and team care is linked to improved outcomes.

• Proper timing of interventions is critical because of the interaction of facial growth, dental occlusion and speech.

• Coordination of care is necessary because of the complexity of the medical, surgical, dental and social factors that must be considered in treatment decisions.

• Better early management leads to better outcomes, fewer surgeries and lower costs. In India, the traditional unmet need in terms of primary cleft repair problem is gradually being addressed and there is no shortage of surgical expertise. The principles of a multidisciplinary approach to treatment have been advocated by the WHO and accepted by the craniofacial community in India.

Some craniofacial centers in India are adopting a multi-disciplinary approach to treatment; together let’s join hands to bring smile on these children’s face.