|MISSION IMPOSSIBLE MADE POSSIBLE
|Year : 2014 | Volume
| Issue : 1 | Page : 52-54
Parents' forum: A novel mission
Amik Garg, Deepa George
Cleft India Parents Association, CIPA Office, Kalkaji, Delhi, India
|Date of Web Publication||5-Feb-2014|
Cleft India Parents Association Office, D-42 GF, Block D, Kalkaji, Delhi - 110 019
Source of Support: None, Conflict of Interest: None
Cleft management in India has come a long way in last decade or so as far as medical assistance to the children in terms of good quality surgery, orthodontic treatment, and so on is concerned. Presently, there are a number of organisations, both government and nongovernment taking remarkable initiatives in this direction with increasing number of quality surgeries being performed year after year. However, a gap still exists in the availability of ''parents groups'' working in this direction to address the anxiety and providing assistance to the new parents of cleft children. Recently, an initiative has been taken by the parents of the cleft children in India to address this gap that has led to the formation of a parent association with the sole objective of identifying/addressing various issues from the perspective of the new parents and disseminating required information and advice to them. This article discusses the need of such an association, its genesis, objectives, and the present status.
Keywords: Cleft lip and palate, cleft mission, parent forum, parents, information
|How to cite this article:|
Garg A, George D. Parents' forum: A novel mission. J Cleft Lip Palate Craniofac Anomal 2014;1:52-4
| Need of a Forum|| |
Like any other parents, we were quite excited about the birth of our second child. I was anxiously waiting for the news to break outside the labor room in a hospital at Delhi when the nurse came out and declared that it is a baby boy. I was quite happy to hear the news especially when the first child was a daughter with the thought that the family is now complete. However, I noticed that the warmth on the nurse's face was missing to some extent and she added that the doctor would be seeing me shortly. I had a feeling that there is something amiss which nurse wanted me to hear from the doctor. The doctor did see me after sometime and he very casually/rightly so under the circumstances mentioned about the cleft lip of the child and said there is nothing to worry and the same will be stitched in a simple surgery.
We had never heard of this word "cleft lip" ever in our lives. Next 1 month was a mix of happiness and depression which we shared with closest of friends. Subsequently, learnt more about this congenital defect, became more aghast to learn that even palate needed to be repaired which ultimately turned out to be bigger concern. Subsequently, we consulted best of the doctors in Delhi and even in rest of India and got the initial surgeries done as per the advice/inputs available, that time, in the year 1995. Thereafter, started a series of other associated challenges like ear infection, speech issues, management of scar, dental alignment, confidence management for the child, looks, and so on. Being a literate couple with exposure to all sorts of communication, we managed the best treatment/the doctors for our child and could take rational decisions. Our child is now 18 years old and we are doing our best to bring him at par with his peer group. But, we know that the gap will continue to exist and there are future challenges, as well like identifying a suitable career, selection/willingness of a suitable life partner, similar anxiety about their children, and so on.
During this journey, we came across Dr. Karoon Agrawal while he was at JIPMER, Pondicherry in year 2003 and subsequently remained in touch who further guided us to Dr. Puneet Batra for orthodontic management of our child who ultimately became the mentor and guide for this initiative by the parents of the cleft children in India. It was during this phase of last approximately 2-3 years when a number of parents interacted with each other at Dr. Puneet Batra's clinic in Delhi and shared their similar and even more depressing stories in varied gravity with each other. During these interactions, these parents also shared their experiences and the challenges they faced during their individual unique journey. They also had the opportunity to meet large number of grown up cleft-affected children coming to the clinic for orthodontic management and noticed some kind of a guilt/lack of confidence within them. This gave rise to a consensus among the parents to educate the new parents on various issues so that the journey faced by their cleft children could be made smoother, less painful/anxious, and with realistic expectations.
Dr. Puneet Batra suggested that we create a forum to this effect through which parents can be educated and given lots of information/assistance on cleft management of their children. It was suggested that information on various stages of cleft lip and palate surgeries, relevant literature, equipment for feeding, availability of doctors/teams near their place of stay, success stories, and so on could also be provided to the parents through this forum. It was felt that this forum could address a large number of issues applicable to the children/parents in our Indian context. Further, the situation is pathetic in India as parents, educated, or otherwise is so ignorant about what has to be done for their cleft children from the time they are born. In rural India people are riddled with superstition-thinking their cleft children as demon possessed will bring bad luck to them, and so on. There are so many horrific stories one hears-all this and above prompted volunteer parents to start a cleft children's parent association in India.
| Establishment of Cleft India Parents Association|| |
This background led to the formation of trust in which volunteer parents contributed for the initial corpus amount, displayed their resolute will to participate in the noble cause, and worked out a number of objectives for themselves. Finally, a trust by the name "Cleft India Parents Association" (CIPA) was registered at Delhi, this year. The initial design of the CIPA web site (www.cipatrust.com) has been completed and the structure also finalized. However, its contents and formal hosting on the web is under progress which shall take some time before it finally becomes functional.
The CIPA is a nonprofit organization whose mission shall be to enhance the quality of life for individuals affected by cleft lip and palate and other craniofacial birth defects. The mission of this association is to reach out to parents of cleft children, help/guide them and give them any kind of support they require in bringing up their cleft children, since getting the treatment/surgery at the right age is extremely crucial and important.
| Parents Forums Worldwide|| |
There is large number of forum existing in western countries like Cleft Lip and Palate Association (CLAPA),  cleft community,  cleft line,  and so on. CLAPA is the UK-based voluntary organization that organizes parent to parent support through its nationwide network.  Cleft smile (The Cleft Lip & Palate Foundation of Smiles) is a US base organization that provides support to individuals and families with cleft lip and/or palate and other craniofacial anomalies.  Cleft line foundation is another US-based organization that provides comprehensive information to educate patients, families, and professionals and makes referral to cleft/craniofacial teams in US. 
There are very few parents' forums in developing countries as of now. The first Cleft Lip & Palate Parents Association was formed in Sri Lanka in the year 2003 under the name "Sanyatha" meaning joined strongly together to achieve a worth purpose.  Similarly, there are other initiatives, though at much smaller scales in other developing countries. However, in India this kind of a parent's forum still does not exist. In this context, the present effort of establishing CIPA is unique, first of its kind in India forum and thus a great leap in the direction of effective cleft management with the support of volunteer parents.
| Objectives of CIPA|| |
Objectives of (CIPA are to provide information and emotional support to parents of children born with cleft lip and palate and to support/empower them on their cleft journeys. CIPA is formed to ensure that parents of cleft-affected children do not feel left alone in their journey for the effective cleft management of their children. The forum aspires to offer support, information, and networking for families anywhere in India dealing with the challenges associated with effective cleft management. The objectives of CIPA are as follows:
- To share experience, problems and joys with others, teach new mothers and fathers on care of cleft children.
- Educate parents of various medical facilities available for cleft management.
- Make available various feeders and educational material/literature to parents.
- Be supportive to every member within the associations' online networks and web site.
- Abide by the associations' mission to build strong relationships, support families, provide guidance, and assist with helpful information.
- Organize fundraising in order to keep the administrative costs as low as possible while maintaining a high level of quality control and high ethics standards in all fundraising activities.
- All donations and fundraisings are done with the permission of the board of trustees and to be used only for the benefit of those born with cleft lip and palate.
- Maintain confidentiality of all members' personal information.
- Provide the high-quality information and research to all individuals.
- To recommend particular team, doctor, hospital, other health care professional, or any particular course of treatment close to their place of stay/preference.
These objectives are to be achieved by holding the trust fund and use its income within India for all purpose that are charitable under applicable laws including providing information, education, training, and emotional support to parents of children born with cleft lip and palate. The benefits of the trust shall be open to all persons irrespective of caste, creed, sex, or religion.
| Participation and Monitoring|| |
In view of the mission of this association to reach out to the parents of cleft children to give them the support for bringing up their cleft children, an active participation in the CIPA is expected from large number of volunteer parents and other individuals willing to contribute to this social cause. The participation to the association can be done by donating money through submission of an online form available through the CIPA website (www.cipatrust.com). In addition, fund raising is also open through the contributions made by the corporate as part of their corporate social responsibility. Further, any individual can become a volunteer and his services can be utilized by providing assistance to parents/children in various forms as per his choice/convenience. The complete process shall be monitored by the board of trustees headed by Dr. Puneet Batra who has also consented to facilitate the reply of various queries received on/offline at the CIPA office located at New Delhi. However, the management of the association and day-to-day running shall continue be the responsibility of the volunteer parents on a rotational basis.
| Conclusion|| |
An initiative in the form of establishing a CIPA has recently been taken by some of the parents of the cleft children in India. Various objectives of the association have been identified by the volunteer parents under the overall guidance of medical professionals working in this area. Presently, the complete effort is at a preliminary stage and its true impact shall be known only when the association gets functional for at least a couple of years for the benefit of new parents of the cleft children. Accordingly, the objectives shall be further refined to accommodate the changing need of the environment to ensure that whole effort becomes more realistic, facilitates positive, fruitful, and satisfying results to both, that is, parents and medical fraternity, simultaneously.
| References|| |
|1.||Available from: http://www.clapa.com/ [Last accessed on 2013 Dec 21]. |
|2.||Available from: http://www.facebook.com/CleftCommunity [Last accessed on 2013 Dec 21]. |
|3.||Available from: http://www.cleftline.org/ [Last accessed on 2013 Dec 21]. |
|4.||Available from: http://www.cleftsmile.org/ [Last accessed on 2013 Dec 21]. |
|5.||Mars M, Wijekoon P. The background, establishment and function of a parents/patients support group in Sri Lanka. Chp 14. Management of cleft lip and palate in the developing world. John Wiley & Sons Ltd; 2008. |