Mission Smile counts on support from more PSUs to cure 21,000 more people born with cleft in Northeast India

Highlights:

• 18,000 surgeries performed over the past 9 years at the only comprehensive cleft care centre of the region in Guwahati
• Assam still has the highest number of 9,000 people born with cleft

Biduram Hajong (name changes) in Baghmara village in South Garo Hills district, is an agricultural labourer with two children. One of his children is a cleft patient. His neighbour Jingdung Marak( name changed) too have three kids of which one was born with cleft. Remotely situated along the Assam-Meghalaya border, the village has several kids born with cleft.

With very low socio-economic condition and without proper healthcare and educational intervention, most of the villagers considered cleft to be a curse of God, till a team of volunteers of Mission Smile visited the village recently. The volunteers reached out to them to make them aware that cleft is not a disease but a physical deformity which can be cured through proper treatment. Mission Smile (Formerly known as Operation Smile) is a government registered Medical Charitable Trust which provides comprehensive cleft care and surgeries free of cost.

Photo : Dipul Malakar / Mission Smile

Subsequently, both the children underwent a surgery at Mahendra Mohan Choudhury Hospital in Guwahati along with a number of such children at the Comprehensive Cleft Care Centre under Mission Smile set up to cure cleft lip and cleft palate. This is the only care centre in the entire northeastern region to cure cleft.

The centre was established in 2009 following an agreement between Government of Assam and Smile India. The cure for cleft lips and cleft palate patients started at the Centre in the same year. Altogether 18,000 cleft surgeries have been performed at this centre from 2009 till 2018.

A study conducted by the Comprehensive Cleft Care Centre, Guwahati reveals that about 9000 such people in Assam are yet to receive necessary treatment to cure the deformity. In India, number of cleft-affected persons requiring cure is estimated to be over one million. The numbers of cleft-affected persons in other northeastern states are: Meghalaya – 1,600; Manipur – 4,000; Tripura - 1,000; Nagaland 3,000; Arunachal Pradesh 2,000 and Sikkim – 400. World Health Organisation (WHO) statistics show that a cleft-affected baby is born among every 700 new born babies.

According to Indian Society of Pedodontics and Preventive Dentistry, a cleft-affected child is born in every three hours in India. However, a child affected from cleft may be having serious issues including to depression and anger. Also, the child may feel isolated which may have an impact on his or her normal life. According to experts, cleft, both in lip and palate is not contagious or infectious but the physical deformity can harm the facial parts specially eye, nose, and frontal bone. They cannot speak in clear voice and it becomes difficult to take food.

Photo : Dipul Malakar / Mission Smile

Dr. Hiteshwar Sharma, the Director of Comprehensive Cleft Care Centre says the reason behind this deformity is yet to be known. However, comprehensive research in this regard to find out the reason is going on. According to WHO 7,600 cleft affected persons died in 1990, and the number reduced to 3,330 in 2013.

A systematic procedure to cure cleft was started in eighties. Initially such treatment was confined to United States and subsequently spread to other countries. In India, initiative for cleft treatment was started in Karnataka way back in 2002, under the initiative of Operation Smile, a non-government organization. The organization started its activity in other states in different phases. It started its activities in New Delhi in 2003 and in Assam in 2009.

The campaign to cure cleft did not take momentum till 2008. However, it got an instant and wide-spread awareness campaign throughout the country after “Smile Pinki”, a documentary based on the story and cure of a cleft-affected child in rural India won prestigious OSCAR in 2009.

Photo : Dipul Malakar / Mission Smile

Dipul Malakar, the General Manager of Comprehensive Cleft Care Centre, Guwahati says the centre facilitates transport and stay apart from the surgery of the patients. It also carries out the difficult task of identifying cleft-affected patients living in different places so that they can be brought to the Centre for surgery.

Malakar says that total cost of a cleft surgery is Rs. 32,000, of which the Assam government provides Rs 17,500 per patient. Mission Smile raises the rest amount from different sources. The amount paid by the state government was Rs. 20,000 earlier.

Dr Hiteswar Sharma says surgery of both cleft-lip and cleft-palate are done at the Centre. However, the patients must have to be at least one-year old for surgery of cleft–palate and at least six months old for cleft-lip. He says about 60 per cent of the patients have both the issues of cleft-lip and cleft-palate. For both the type of surgery the body weight of patient must be at least six kilogram. He also says around 70 per cent of the babies are below this body-weight. The Centre also looks after the child till the period of achieving this weight, which also delays the treatment at times.

Photo- Bhabesh Medhi

Malakar says that financial assistance received from Indian Oil Corporation (IOC) has helped the Centre to go for a cleft-lip and cleft-palate surgery of a number of children living in Assam-Meghalaya border areas since November 21, 2018. He informs that IOC has come forward to support cleft surgery of 200 children from Assam and 100 from Meghalaya.

Malakar is hopeful that other PSUs too will come forward to help the Mission Smile financially to achieve its goal towards a cleft-free Northeast over the next five years.

Bhabesh Medhi

( Bhabesh Medhi is a journalist based in Guwahati. He is a recipient of Reach Media Fellowship, 2018 under which he has been reporting on health issues. He can be reached at [email protected] )