When Madiha, Jyothi, and hundreds like them received free surgeries so they could talk, breathe, and eat again

4th Oct 2016
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When Madiha was born, Ayesha Khatoon’s mother-in-law refused to hold the newborn, cursing her for giving birth to such a tainted child. Even the neighbours wouldn’t spare a chance to taunt her. A devastated Ayesha wept in worry over her daughter’s fate, for she was born with a prominent cleft on her lip. Her husband Jameel was a simple tailor, and even though they knew that a simple cleft repair surgery could correct Madiha’s condition, they could not dream of being able to afford it. This was until one of their relatives told them of an organisation that was conducting free corrective surgeries at a nearby city hospital. In just 45 minutes, Madiha’s life was transformed.

Jyothi is another teenage girl from Darbur village in Karnataka. An image of innocent beauty, she was born with a cleft lip and lived with it for 14 years. Under this initiative, she was provided a free surgery at Smile Train programme at Bhagwan Mahavir Jain Hospital in Bengaluru. Her first real smile left her parents overwhelmed and struggling for words.

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Sabita Mukhiya, before and after.

Not just a good smile; a healthy smile.

While we’ve all heard of cleft lip, most of us are unaware of the scale of this problem. In India alone, one in every 700 children is born with a cleft lip and over 10 lakh Indians continue to live with untreated clefts. This is a serious lip or palate deformity that has a lasting impact on the patient’s life — socially, emotionally, and even physically, as they face problems in speaking, breathing, and eating. The silver lining, however, is that a simple 45-minute corrective cleft-repair surgery, especially through early intervention, can transform a child’s life. However, the condition is often left untreated due to ignorance, lack of access to treatment, or simply finding the treatment unaffordable.

This was the genesis of Project Muskaan, beauty and healthcare giant Himalaya Lip Care’s initiative aimed at spreading natural smiles through healthy lips. To that effect, the company partnered with Smile Train India and committed to supporting 100 cleft surgeries for impaired children between three months and 15 years of age from the underprivileged sections of society.

“As a leading player in the lip care category, we felt we should go beyond our lip care products and give a helping hand to those not fortunate enough to be blessed with healthy lips. This is when we deep dived into the problem of cleft lip and palate,” says Rajesh Krishnamurthy, Business Head — Consumer Products at The Himalaya Drug Company.

Himalaya meets The Smile Train

Smile Train has been one of the most experienced and well-stacked organisations when it comes to this condition, having been collecting intel on it for over 17 years. The international children’s charity was founded in 1999 and has worked towards providing complete care to children suffering from cleft lip and palate. They not only provide the surgery, but also sponsor the entire rehabilitation. “Sometimes three to four surgeries are required, followed by sessions with speech therapists, orthodontists, plastic surgeons, maxillofacial surgeons, and several other specialists involved in the process,” says Mamtaa Carroll, Vice President and Regional Director — South Asia, Smile Train. Their sustainable model provides training, funding, and resources to empower local doctors in over 85 developing countries to provide 100 percent free cleft repair surgery and comprehensive cleft care in their own communities.

As they have worked closely with government bodies and posted volunteers across the country to spread awareness, collect data, and reach beneficiaries, Himalaya’s Muskaan was flagged off in July 2015, with them as partners, in order to identify worthy candidates.

For the first edition of the drive, 100 applications from various villages and towns in Karnataka, Punjab, and West Bengal were accepted for the final procedures. All the surgeries were performed across three hospitals in Bengaluru, Amritsar, and Siliguri respectively, with a 100 percent success rate. The Medical Advisory Board reviews all surgeries performed.

A challenge they encountered, which mirrored Smile Train's past experience as well, is the astounding lack of awareness. "Many associate clefts with myths such as ‘God’s will’ or that it is caused because the expecting mother used a knife during an eclipse. People do not get a cleft operated as they accept it due to such myths. In rural areas, people do not know that cleft is correctable and hence do not even approach hospitals for the treatment," says Mamtaa.

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Next stop

So, as they gear up for the second edition, they understood that the best way to break such myths or change perceptions was to build on a real transformational journey of a cleft patient. Jyothi, their protagonist, featured in an ad campaign that documented her life and transformation, bringing to life her emotions and aspirations. Bollywood singer Sona Mahapatra lent her voice to the video, and hence, the cause as well.

This campaign became an inspiration for many to shake off superstitious apprehensions and take the leap. They set up a toll-free number to accept inquiries, and received over 300 calls willing to apply for the next batch of surgeries, out of which, 200 have been selected for the next leg of Muskaan.

To ensure sustainability of the campaign, Rs 2 from the purchase of every Himalaya lip balm will go towards Muskaan. “Himalaya alone cannot solve this problem, but through greater community participation from other brands, individuals, and NGOs, we can hopefully give every single child in India an opportunity to smile freely,” says Rajesh

The journey of the train

In the 15 years of its existence, Smile Train India has provided free cleft repair surgeries to more than 4,75,000 children in India through 170 partner hospitals and 300 partner surgeons.

Their model allows local doctors to provide care year-round rather than the limited engagements of the "mission-based" model. To train their surgeons, Smile Train has engineered a virtual surgery simulator software that builds on the computerised imaging from two patients. It allows real-time interaction with a 3D surgical simulation, aided by high-definition intra-operative video and voice over. The software is multilingual and provides advanced training modules which are realistically detailed and enables a doctor to perform a virtual surgery. It is also open-source and available for free, and does not require any special hardware to use.

Over the years, they have been able to multiply their impact through the various companies like Bajaj Group, Indiabulls Foundation, and TATA Trusts that have partnered with them. They have even collaborated with government and civic bodies like the Tamil Nadu Sarv Siksha Abhiyan; National Health Mission, Gujarat; and the Rashtriya Bal Kalyan Karyakram, part of National Health Mission, Karnataka. Their crowdfunding platform gives an opportunity to socially conscious citizens to do their bit, as well.

The extra (s)mile

To mark their 15th anniversary last year, they even declared a ‘Cleft Week’, where state-wise training programmes and fun-filled activities were carried out for children at all their partner hospitals. It was launched in June 2015 in Madhya Pradesh. Thereafter, cleft weeks became a monthly routine, and have been organised in Karnataka, Tamil Nadu, Pondicherry, Chhattisgarh, Gujarat, Maharashtra, Uttar Pradesh, etc.

Despite their extensive network, though, there are over a million children who continue to live with unrepaired clefts and over 35,000 children are born with one every year. “Hence, there is an urgent need to upscale operations and for this we need support from corporates to adopt the cause of cleft and support us through their CSR initiatives,” Mamtaa concludes.

 

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