Story of cleft children- Ibrahim and Mehrin

KNOW HOW YOUR SUPPORT FOR SURGERY COUNTS! 

AND HOW A SIMPLE SURGERY HANGED IBRAHIM AND MEHRIN'S LIFE

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Deutsche Cleft ABMSS started a weeklong search and awareness camp in Hyderabad on the eve of World Smile Day last year. Among others, we found two cleft children (Ibrahim and Mehrin) who hail from poor family and they were not in a position to afford the cost of their surgery. During the camp, we could learn about their families and how they have to face difficulty even to bring them to hospital for medical check-up.

Their stories are testimony to how cleft is understood in many communities in our country and why we need extensive search and awareness camps to identify them and convince them for a free cleft surgery. Because for them, impact will begin to show later but agreeing them for a surgery is one of the tedious task to do.

We appealed to our generous donors to support the two needy children who could not wait as they needed a dignified life and especially Ibrahim was very fond of going to school. Your donation did not go in vain; rather impacted to their lives highly.

MOHAMMED IBRAHIM (5 YEARS)

Mohammed Ibrahim hails from a very poor Muslim family who live in Hasan Nagar, a slum in the south Hyderabad. Ibrahim has one brother and a sister younger to him. There the little boy lives with his family in the simplest circumstances. He is already five years old and has not undergone surgery because his parents could not afford the surgery.

Ibrahim is a boy with curiosity. He is interested to know so many things, manages to make friends even if some of them don’t treat him well because of the deformity.  His father Muzeeb (42) hardly takes care of their family and its Riswara 32 (Ibrahim’s mother) takes care of her kids.

Ibrahim’s father does not support much to his family since he does not go to work every day.  For that, Ibrahim’s grand parents came to front and have always been supporting her. But Roswara works in other’s house to feed their kids.

They needed our help since they can’t otherwise afford to do the operation of the children though they knew that Ibrahim’s operation can be possible and there are some organizations that can help them. But they did not have any information about any organization before our project animator reached out there.

Ibrahim is a positive child. He tries to do everything even if he has to face difficulty while eating, speaking and playing with other school children.  He also wants to read because his family members identified one day he was very interested to go to school. 

MEHRIN (4 YEARS)

The little girl lives with her parents and four siblings in a poor shelter in a slum in the west of Hyderabad. Mehrin has 2 brothers and two sisters. And she is the third child in the family.

Mehrin’s father Sheikh Moiz (40 years) takes alcohol all the time and does not take responsibility for his family. Even though he works as a carpenter, but most of his income goes in taking alcohol. For that reason, Parveen (31) , Mehrin’s mother had to work as a labourer in a plastic company . With her little income that is the source to feed her family members , she could not think of sending her kids to school. Not a single child of her is enrolled in school.

When Mehrin was born, the neighbours and community members started seeing the child differently. Parveen was worried to see all this was happening with her and she was thinking how Mehrin’s face can be normal like others.

When we told the mother of the free treatment option, they could hardly believe their luck - finally their daughter should get a "new face"! However, it was difficult to take a decision because she could hardly take any decision for her kid as their family was a male dominated ones where females are only allowed to do household stuff and earn for the family. However, Parveen fought with her family for Mehrin’s treatment as she was really worried about her daughter’s future. Mehrin’s life can see a drastic change the way people are looking at her deformity, with multiple surgeries.​​

The surgery date was postponed by a few days: For Ibrahim, it was finally on October 8, and two days later was also Mehrin from our surgeon dr. Vijay Kumar operates in Hyderabad. As expected, both interventions went very well and without complications. See the result of the surgery and thank-you messages from Ibrahim's grandfather and Mehrin's mother. Since the two children have just been operated on, the mouth is still slightly swollen. But soon, only a fine scar will remember her disfigurement.

Source: http://www.abmss.in/success-story-of-ibrahim-and-mehrin.html

Right to Education

The Right of Children to Free and Compulsory Education Act or Right to Education Act (RTE), is an Act of the Parliament of India enacted on 4 August 2009, which describes the modalities of the importance of free and compulsory education for children between 6 and 14 in India under Article 21a of the Indian Constitution. India became one of 135 countries to make education a fundamental right of every child when the Act came into force on 1 April 2010.

 

The Act makes education a fundamental right of every child between the ages of 6 and 14 and specifies minimum norms in elementary schools. It requires all private schools to reserve 25% of seats to children (to be reimbursed by the state as part of the public-private partnership plan). Kids are admitted in to private schools based on economic status or caste based reservations. It also prohibits all unrecognised schools from practice, and makes provisions for no donation or capitation fees and no interview of the child or parent for admission. The Act also provides that no child shall be held back, expelled, or required to pass a board examination until the completion of elementary education. There is also a provision for special training of school drop-outs to bring them up to par with students of the same age.

 

The RTE Act requires surveys that will monitor all neighbourhoods, identify children requiring education, and set up facilities for providing it. The World Bank education specialist for India, Sam Carlson, has observed: "The RTE Act is the first legislation in the world that puts the responsibility of ensuring enrolment, attendance and completion on the Government. It is the parents' responsibility to send the children to schools in the US and other countries."

 

The Right to Education of persons with disabilities until 18 years of age is laid down under a separate legislation - the Persons with Disabilities Act. A number of other provisions regarding improvement of school infrastructure, teacher-student ratio and faculty are made in the Act.

 

Education in the Indian constitution is a concurrent issue and both centre and states can legislate on the issue. The Act lays down specific responsibilities for the centre, state and local bodies for its implementation. The states have been clamouring that they lack financial capacity to deliver education of appropriate standard in all the schools needed for universal education. Thus it was clear that the central government (which collects most of the revenue) will be required to subsidise the states.

 

A committee set up to study the funds requirement and funding initially estimated that INR 1710 billion or 1.71 trillion (US$38.2 billion) across five years was required to implement the Act, and in April 2010 the central government agreed to sharing the funding for implementing the law in the ratio of 65 to 35 between the centre and the states, and a ratio of 90 to 10 for the north-eastern states. However, in mid 2010, this figure was upgraded to INR 2310 billion, and the center agreed to raise its share to 68%. There is some confusion on this, with other media reports stating that the centre's share of the implementation expenses would now be 70%. At that rate, most states may not need to increase their education budgets substantially.

 

A critical development in 2011 has been the decision taken in principle to extend the right to education till Class X (age 16) and into the preschool age range. The CABE committee is in the process of looking into the implications of making these changes.

 

The Ministry of HRD set up a high-level, 14-member National Advisory Council (NAC) for implementation of the Act. The members included Kiran Karnik, former president of NASSCOM; Krishna Kumar, former director of the NCERT; Mrinal Miri, former vice-chancellor of North-East Hill University; Yogendra Yadav – social scientist. India

Sajit Krishnan Kutty, Secretary of The Educators Assisting Children's Hopes (TEACH) India; Annie Namala, an activist and head of Centre for Social Equity and Inclusion; and Aboobacker Ahmad, vice-president of Muslim Education Society, Kerala.

 

A report on the status of implementation of the Act was released by the Ministry of Human Resource Development on the one year anniversary of the Act. The report admits that 8.1 million children in the age group six-14 remain out of school and there’s a shortage of 508,000 teachers country-wide. A shadow report by the RTE Forum representing the leading education networks in the country, however, challenging the findings pointing out that several key legal commitments are falling behind the schedule. The Supreme Court of India has also intervened to demand implementation of the Act in the Northeast. It has also provided the legal basis for ensuring pay parity between teachers in government and government aided schools. Haryana Government has assigned the duties and responsibilities to Block Elementary Education Officers–cum–Block Resource Coordinators (BEEOs-cum-BRCs) for effective implementation and continuous monitoring of implementation of Right to Education Act in the State.

 

It has been pointed out that the RTE act is not new. Universal adult franchise in the act was opposed since most of the population was illiterate. Article 45 in the Constitution of India was set up as an act: The State shall endeavour to provide, within a period of ten years from the commencement of this Constitution, for free and compulsory education for all children until they complete the age of fourteen years.

 

As that deadline was about to be passed many decades ago, the education minister at the time, MC Chagla, memorably said: "Our Constitution fathers did not intend that we just set up hovels, put students there, give untrained teachers, give them bad textbooks, no playgrounds, and say, we have complied with Article 45 and primary education is expanding... They meant that real education should be given to our children between the ages of 6 and 14" - (MC Chagla, 1964).

In the 1990s, the World Bank funded a number of measures to set up schools within easy reach of rural ommunities. This effort was consolidated in the Sarva Shiksha Abhiyan model in the 1990s. RTE takes the process further, and makes the enrolment of children in schools a state prerogative.

Source: http://righttoeducation.in/know-your-rte/about

Library on wheels

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-