Bring back the smile: Tackling cleft in India, one doctor at a time

Cleft can be very easily and regularly detected at the pre-natal stage by ultrasound scans.

By Dr. Nandita Palshetkar and Mamta Carroll

Almost a year ago our Hon’ble Prime Minister launched the Fit India Movement encouraging children to take up sports and promising that the government will act as an active catalyst to promote a healthy India. At the same time, India is also a country that ranks lower than Bangladesh and Sudan on the global healthcare access and quality index. While India’s Universal Immunization Programme is one of the largest public health interventions with an extensive vaccine delivery system resulting in India being declared a polio free country, it’s also a place where people believe that cleft lip and palate is caused by a solar eclipse or is a result of God’s wrath. It has always been a country of contrasts.

Cleft is a much-neglected issue and ranks very low in the healthcare priorities in the Indian scenario. We are struggling with widespread health problems like malaria, tuberculosis, malnutrition, etc whose incidence amongst children is more than cleft lip and palate, making it very difficult even for healthcare practitioners to focus on it as a problem. Every year, more than 35,000 children are born with cleft lip and palate in India, with an even bigger stigma attached to this and hence considered as a much larger social health problem. Have you ever seen an adult with a cleft lip? Probably not, if you live in the US or in another developed country. This is not because the incidence is lower, but because the condition is usually fixed within a child’s first 6 months of life. While it appears that more kids have health conditions in low-income countries in Africa and Asia, the truth is that children in high-income countries have access to early and high-quality treatment enabling them to live healthy lives.

Cleft is one of the rare anomalies that develop at the foetal stage. Cleft can be very easily and regularly detected at the pre-natal stage by ultrasound scans. Once the baby is delivered, it is easily identifiable immediately. It is the gynaecologist that is the first point of contact for any expectant mother and who she trusts blindly throughout her pregnancy. Therefore, the onus lies on the gynaecologist to identify clefts at an early stage and flag it off to the paediatric/cleft surgeon who can intervene at a correct time. But this is easier said than done.

There is a major lack of awareness amongst the gynaecologist fraternity on how to interpret an ultrasound correctly in order to flag off foetal anomalies like cleft lip and palate. There is also a lack of an accurate reporting mechanism to ensure that they loop in surgical intervention at the correct time. There are a few critical things that the gynaecologist community can do to address these challenges. Some of these are as below:

• Develop protocols to ensure ultrasound detection of foetal anomalies are flagged off at the right time

• Participate in more training programs and work in collaboration with support therapies

• Identify and inform the concerned paediatrician after birth to seek timely surgical intervention

• Take the time to counsel parents to debunk myths that cleft anomalies are not a result of God’s wrath, Bad Karma, solar eclipse, etc but a common congenital malformation

• Follow up with the mother in subsequent consultations to ensure they seek treatment

• Create awareness that cleft lip and palate are completely treatable and if intervened at the right time will lead to better rehabilitation

• Re-iterate the importance of supportive therapies like speech therapy, ENT and orthodontic treatment for a better quality of life

Enough and more is said about creating awareness, but few are able to address the issue of affordability and accessibility. Every year July is earmarked as the National Cleft and Craniofacial Awareness and Prevention Month to not only raise awareness and improve understanding of these issues, but also celebrate the fulfilled , happy and dignified lives that such children can lead through simple interventions. There are many non-government organizations that provide comprehensive cleft care to cleft affected children in the most remote areas of the country. And with the medical fraternity supporting early diagnosis and intervention, it will only ensure that no child goes untreated and gets a chance to live a dignified life in the society.

(Dr. Nandita Palshetkar, President 2019- Federation of Obstetric and Gynaecological Societies of India and Mamta Carroll , Vice President and Regional Director , Asia – Smile Train India. Views expressed are personal.)