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35K KIDS ARE BORN WITH CLEFT LIP, PALATE A YEAR IN INDIA

We all know that physical attractiveness is highly considered in today’s society even if the concept of beauty has changed radically from what it was before. And about smile, “the expression one wears on one's face is far more important than the clothes one wears.”

Usually, when a baby is about to born, the family members get elated to welcome the new member and they start guessing who she or he will look like. They wait anxiously to have a first look at the child. But in that case when the child is born with cleft, the enthusiasm instantly gets dripped. In fact, most of us are not ready enough to accept a child with cleft as same to a normal child; may be attributed to our lack of understanding on cleft.

However, cleft lip and palate malformations have a global occurrence of up to 1 in 500 live births worldwide and in India, an estimated one in every 800 children in are born with cleft lip or palate. Various research studies and data reveal that about 35,000 children in India are born with a cleft lip and palate every year and sadly one out of ten of these children hardly get to see their first birthday. As a fall out of our ignorance on cleft, people face myriad of problems in their life such as social ostracization, prejudice and many more.

What is cleft lip and palate?

Cleft lip and palate are genetic facial deformities that can occur separately or together. A cleft lip can range from a small notch in the lip, to a more severe gap in the lip that proceeds up to the base of the nose. Cleft lip may occur on one side, or both sides or the mouth. A cleft palate is where the two plates that form the roof of the mouth are not completely fused together, creating either a soft palate or a gaping hole in the roof of the mouth that exposes the mouth to the nasal cavity.

Myth versus reality on cleft

Research studies and individual interview results have revealed that many of the families ascribe the cleft to natural causes or God’s wish. Families are also convinced that cleft has come as a punishment to their sinned activities in the past. In some cases, mother of the child is blamed that she must have some illicit relationship other than husband that has cursed her cleft child. Other factors than people attribute to the deformity are solar eclipse during pregnancy, a previous miscarriage, and in one case prematurity or if any family has a history of cleft.

However, scientists who are researching on the cause of cleft have revealed in a study that mothers who regularly take multivitamins containing folic acid before conception and during the first two months of pregnancy may have a reduced risk of giving birth to a baby with a cleft. Research also indicates a link between maternal smoking and an increased risk of clefts. High doses of vitamin A have also been suggested to play a role in some birth defects, including cleft lips and cleft palates.

Stigma and social effects of cleft

Stigma and social discrimination is as such synonymous with cleft. There are also inequalities existing in terms of access to and quality of cleft care between urban versus rural area and between the rich and the poor.  A majority of these children and adults hail from poor families and they can hardly afford to a cleft surgery. Many of them are also unaware that cleft can be treated. It is estimated that there is a backlog of one million cleft cases in India and the systems that are in place are not sufficient. However, concerns about the well-being of children born with a cleft lip and/or palate have stimulated research in various fields (Hunt et al., 2006). The incidence of behavioral and social problems in infants and children born with clefts suggests that these children are at risk for social-interactive difficulties (Collett and Speltz, 2006), as well as for difficulties with communication and cognitive competencies (Field and Vega-Lahr, 1984).

Can they get a second chance at life after surgery?

It is important to know and help others understand that cleft is treatable. Organizations like Smile Train and Deutsche Cleft-ABMSS have been providing free medical treatment for people with cleft. It is reasonably expected that the child’s life would be definitely better after the deformity was corrected. There can be seen a lot of improvement in terms of speech, feeding and most importantly appearance and self-confidence once the cleft lip/palate or both are corrected.

Policies covering cleft care in India

The Government of India has the Rights of Persons with Disabilities Act 2016 which classifies physical disabilities of various parts of the body but unfortunately cleft lip and palate is not considered a disability. If somebody has a cleft, they may not be able to speak normally, eat; thus a sufficient reason to be included under the Act if we define ‘Disability’ in true sense.

The Rashtriya Bal Swasthya Karyakram (RBSK) is a new initiative aimed at screening over 27 crore children from 0 to 18 years for 4 Ds -Defects at birth, Diseases, Deficiencies and Development Delays including disabilities. Children diagnosed with illnesses shall receive follow up including surgeries at tertiary level, free-of-cost under the National Health Mission that includes cleft lip and palate.

 As per the information received under the RTI from the Union Ministry of Health and Family Welfare, the scheme is being implemented with a total number of 11,420 RBSK mobile health teams across the country and a total of 24,547 children with cleft lip and palate are identified only in the financial year 2016-17. But this is just the beginning.

The figure of cleft children further calls for a triggered effort to prioritize the issue, identifying scope at both the Government as well as non-profit institutions to bridge the gap that exists between supply and demand and help people with cleft lead a second chance in their lives.

Conclusion

 There is no noble way to help people with cleft to bring back their smiles and allow them to lead a dignified life. But even after sustained efforts, most of the people, especially in rural areas, are unaware about cleft and related facilities. Therefore, the Government as well as cleft care organizations go together in helping people understand about cleft, its causes and available facilities through massive social awareness drive. We all should team up our effort to ensure that people are aware about cleft and let them live a dignifiedlife with brighter smiles.

http://www.dailypioneer.com/state-editions/bhubaneswar/35k-kids-are-born-with-cleft-lip-palate-a-year-in-india.html

Smile! All the way…

Bringing smiles with those children with cleft is what Deutsche Cleft ABMSS is striving for. People have to change their mindset on cleft and accept them well in the society so that the children can live a dignified life.

Because of your smile, you make your life more beautiful. A child’s smile is what all parents wait for. But not all the children can fulfill their parent’s wish. Yes, we are talking about children with cleft. If you ever come across a child with cut lip, you could feel why smile is so precious for them.

Meanwhile, meet the tiny boy of Keonjhar Tapan Kumar Ray and Saroj Barik from Nayagarh who were both born with a cleft lip. Nobody in their respective communities accepted well with these two children who had nothing to do with the deformity. Rather, they needed support from family and neighbours to live a dignified life. Tapan’s father Mukund Ray says “it was not easy to grow him up while on the other hand people started talking bad about our son without knowing anything”. In India, every year there are 35000 of such Saroj and Tapan born and most of them find it difficult to afford the treatment.

Meanwhile, we catched up with Dr. Sthitaprajna Lenka, a maxillofacial surgeon associated with the free cleft surgery initiatives in SSB Hospital who told us “children with cleft have to go with numerous complications like feeding, breathing and without proper care; some of them may lose their lives. But cleft is treatable and with a simple surgery, a child can live a normal life”.

However, organizations like Deutsche Cleft ABMSS, Operation Smile are providing free cleft surgery for such needy children across states in India.

Myths play as a barrier to this disorder. Certain communities believe that a child will be born with cleft if a mother during her pregnancy looks the solar clipse or cuts lime during Solar Eclipse. Some others attribute the cause as an act of fate. And importantly, the children and their mothers are often ostracized and abandoned because of the cleft.

Dr. Dushyant R Prasad, an international Healthcare Manager working for the cleft children shares “Every year 1 out of 700 children are born with cleft. But identifying patients and convincing them for surgery is the toughest part. Therefore, we are scaling up our programmes to spread awareness on cleft among masses apart from funding cleft surgeries for needy children who can live a normal life then”.

To read the full story in details, please browse the below  link to get touched  https://yourstory.com/read/ed1da0fa8f-smile-all-the-way-

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Odisha based blogger and journo bagged Laadli Media award

Bhubaneswar:The 8th Laadli Media Awards for Gender Sensitivity 2016 (Northern and Eastern Region) were given today at a function at Chinmaya Mission in New Delhi today. Odisha based writer and social activist Naba Kishor Pujari bagged this award in the Print Article category from Eastern Region for his writings on gender sensitivity and equality.

Organised by Population First, and supported by Colors TV and UNFPA (United Nations Population Fund), the Laadli Media Awards are given to recognise efforts by those in the media and advertising Agency industry who work to ender gender prejudice.

The awards have been given since 2007 is one of the Prestigious Awards in India for media and writer fraternity and every year Population first is reaching new heights in terms of success of the programme as well as the applications received for the Award. The guests of honour at this year’s event were Diego Palacios, country representative of UNFPA (United Nations Population Fund), Stuti Narain Kacker, NCPCR(National Commission for Protection of Child Rights), famous theatre personality Dolly Thakore, Bollywood Actress Sushama Seth and Padmashri awardee Syeda Hameed, former member of the Planning Commission.

The winning entry of Mr. Pujari for the award highlights the lack of Policies to provide land rights to Single Women that makes a strong case for an official definition of the term Single Women as a first step towards conferment of land rights of Single Women.

See more of the news at : https://orissadiary.com/odisha-based-writer-naba-kishor-pujari-bagged-laadli-media-award/

Odisha: Public Hearing Highlighted Gaps in RTE Implementation

A public Hearing on RTE was organised in Berhampur to take stock of the ground level implementation of RTE Act and to ensure the grievance redressal of cases which either violates the RTE Act or lopsided implementation of the Act.


Report by OD bureau; Berhampur: Dusasan Malik, a PanchayatSamiti  member of RajarbadiPanchayat, said that Rubangi UP school has no playground, less teachers in accordance with Pupils Teacher Ration and other infrastructural deficit.

MDM is not being served properly. Like his case, around 40 cases were heard during the public hearing  organized by National Coalition for Education on Right to Education at Utkal Ashram, Berhampur, Ganjam. Legislator, SMC Members, members of PanchayatSamitis, representatives of NGOs also spelt out the ground realities of RTE Act implementation in the state.
The programme was organized in association with ISRD and CHILDLINE. Issues pertaining to RTE Context like, SMC  Management, teachers vacancy and spending on education like supply of textbook and school uniforms were vividly discussued.
Explaining the purpose of the public hearing, State Advocacy Coordinator of NCE Mr.Naba Kishor Pujari said that Public hearing is a major platform to discuss issues, challenges and affirmative actions regarding RTE Implementation.Spending on public education is a core challenge and therefore, there is a need to come up with such cases so that some issues can be resolved.
Addressing the gathering, Local MLA Mr.Ramesh Chandra Chyau Pattnaik appreciated the effort of NCE and ISRD and pointed out that education should be considered as a common issue, and he assured that after the cases are collected , he will definitely look after the matters.
Participating in the public hearing, Project Coordinator, pedagogy of Sarva Siksha Abhiyan, Ganjam Mr. ManoranjanSahu responded to all queries and assured of undertaking follow up and monitoring of the cases.