A New Smile For India: The Journey To Overcome Cleft Lip & Palate

In the heart of India, a silent epidemic affects 1 in 500 to 800 newborns with cleft lip and palate. This birth difference, which is more common here than the global average, presents a significant challenge to both healthcare and society.

Understanding Cleft:

Babies are born with splits in their lips or the roof of their mouth. Doctors call these ‘orofacial clefts’. There are two main types: some babies have a split in their lip (which might also affect the roof of their mouth), while others have a split only in the roof of their mouth. A recent study in 2023 found that boys are more likely to have these clefts than girls.

Clefts in a baby's mouth or lip can happen because of things that affect a mom during the first three months of pregnancy. This is when the baby's face is forming. The upper lip comes together between weeks 6 and 8, and the roof of the mouth (palate) forms between weeks 8 and 12. If something interrupts this process, a baby might be born with a split in their lip, the roof of their mouth, or both. Babies born with clefts need care for a long time to help them with eating, speaking, and looking their best.

Addressing Challenge:

Cleft lip is more prevalent in lower socioeconomic groups. Research indicates a link between the incidence of cleft lip and the lack of prenatal folic acid supplements, suggesting a connection between cleft type, prenatal folic acid intake, and socioeconomic status. Further studies are needed, especially since many mothers in low- and middle-income countries lack access to folic acid supplements and proper prenatal care.

Dr. Pooja Lodha, foetal medicine expert at AMOGS, Pune, emphasised that while the causes are multifactorial, prevention is key. She talked about the preventive measures, including ensuring proper maternal health, particularly folic acid supplementation before and during pregnancy.She suggested fortifying common foods with folic acid as a public health measure, similar to iodine fortification in salt. She stressed the importance of thorough prenatal care, including genetic counselling and ultrasounds to detect clefts early.

 Lodha emphasised the importance of preparing couples emotionally, financially, and socially when a cleft is detected prenatally. She also addressed the social stigma associated with clefts, particularly in rural areas, and the role of organisations like Smile Train in providing financial support for treatment.

Beyond Physical Challenges:

Kids born with a cleft lip or palate face many challenges beyond just looks. They often struggle with feeling good about themselves, especially when meeting others who might not understand. This can make them sad, worried, and less likely to join in social or school activities. Trouble with speaking and eating can also make them feel frustrated. Helping them in all these ways is key to boosting their confidence and success in life.

Dr. Saranya Jaikumar, an educational psychologist and independent expert for the Government of India, transformed her personal adversity into a source of strength and inspiration for others. She actively runs several initiatives designed to offer holistic support to children with cleft lips. One notable programme is a comprehensive counselling and mentorship initiative that pairs children with trained psychologists and mentors who have overcome similar challenges. “I have collaborated with schools to implement educational workshops that promote inclusivity and understanding, helping to create a more supportive environment for these children,” she added. 

Smile Train is the world's largest cleft-focused organisation. They have supported over 1.5 million free cleft surgeries globally. They offer free surgeries, teach doctors how to do these operations, and try to reach families in far-off places. They also teach people about clefts to reduce shame and wrong ideas. The organisation's goal is to see treated children flourish and feel confident about themselves.

Susannah Schaefer, President and Chief Executive Officer (CEO), Smile Train, shared important insights about cleft lip and palate treatment in India. She emphasised that the passion for this work comes from the rewarding experience of changing lives. The impact is tangible. She highlighted the importance of early intervention, as treating older children can be more complicated. Smile Train's success is attributed to their partnership model, which invests in training local medical professionals who understand their communities best. They've made progress in reducing the average age of patients from 10 years to less than 1 year. 

Mamta Carroll, Senior Vice President and Regional Director, Asia, Smile Train, explained their comprehensive approach to raising cleft awareness in India. They start by training grassroots health workers to identify cleft cases and counsel families, emphasising the availability of free treatment at partner hospitals. She identified that the key challenge is convincing people that the treatment is truly cost-free. Families who receive treatment often become advocates, sharing their positive experiences and creating a ripple effect of awareness in their communities.

Carroll was notified about extending their reach by partner hospitals using outreach vans, and the organisation operates a toll-free helpline for information and support. "We've evolved to provide comprehensive care, from nutritional support to speech therapy and orthodontics. We're training health workers and using mobile vans for outreach. Former patients have become our best advocates,“ she added.

As India continues its fight against cleft lip and palate, the combined efforts of organisations, medical professionals, and survivors are painting a brighter future. With each surgery, each therapy session, and each act of awareness, India moves closer to a world where every child can smile freely. 

Musharrat Shahin

BW Reporters The author is working as correspondent with BW CIO