|Year : 2016 | Volume
| Issue : 2 | Page : 61-62
Cleft awareness week
Editor in Chief, Journal of Cleft Lip Palate and Craniofacial Anomalies, Department of Burns, Plastic and Maxillofacial Surgery, VM Medical College and Safdarjung Hospital, New Delhi, India
|Date of Web Publication||2-Aug-2016|
T 23, 1st Floor, Green Park Main, New Delhi - 110 016
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Agrawal K. Cleft awareness week. J Cleft Lip Palate Craniofac Anomal 2016;3:61-2
Cleft is a subject very close to the hearts of every plastic surgeon. The cleft lip and palate (CLP) requires a set of fascinating operative procedures which need to be modulated for every child. Every surgeon incorporates some innovative steps and feels proud about it. The surgical techniques to reconstruct the anatomical abnormalities are well established, but a lot more needs to be done to make these children and parents lead a normal social life.
For good normal functional recovery, the surgeries need to be performed at an appropriate time. Many nonsurgical and surgical procedures need to be done from time to time to achieve normalcy. At present, these facts are known only to the cleft surgeons and some of the cleft team members. However, there is still a lack of awareness among the masses, especially in the developing countries. More than 170,000 children are born with CLP in the developing world. In India itself, more than 35,000 children are born with cleft annually, many of them requiring multiple surgeries for full functional and anatomical correction. Smile Train partners in India alone are performing approximately 50,000 cleft-related surgeries, and rest of the cleft surgeons too must be performing equal number of operations. In spite of this, it will be decades before the backlog can be taken care of.
Apart from these numbers, there is a large group of parents who are not aware of the possibility of making these children normal. They may not have cleft care centers in the vicinity, or they may not have medical and paramedical personnel who can guide the parents properly. Hence, there is a need for a continuous effort to improve the awareness regarding the prevention of cleft and also bringing up of these children.
In the developed world, the vast majority of children born with CLP is treated well on time and leads almost a normal life. In spite of this situation, the American Cleft Palate-Craniofacial Association (ACPA) and Cleft Palate Foundation (CPF) have designated July as the month of cleft and craniofacial awareness and prevention. During July, these organizations along with many agencies propagate various aspects of cleft care, their feeding issues, care of oral hygiene, care of ear, need for speech therapy, and psychological and financial support to the parents.
ACPA uses every possible method to spread awareness and prevention including the use of newer technology and social media. CPF has very good videos for their campaign. One of the major thrust areas during these awareness programs is fund-raising. The funds raised are used for helping the parents in their own country. During this month, ACPA and CPF recognize the efforts of various organizations working to ensure a better life for those affected with CLP and craniofacial anomalies.
It is a fact that millions of children and adults in the developing countries suffer with unrepaired clefts. Many are abandoned shortly after birth or kept hidden away from society. Most find it difficult to attend school, communicate easily, find jobs, or get married. They do not consult the specialist on time; hence, the quality of care is far below the optimum and there is lack of facilities for secondary support. In spite of financial support from national and international organizations, the scenario is far from satisfactory. The Smile Train, Operation Smile, and many more organizations have brought smiles to hundreds and thousands, but it is not enough.
During one of the Annual Conferences of Indian Society of Cleft Lip Palate and Craniofacial Anomalies (indocleftcon), there was an animated discussion on the proposal to observe a cleft day or cleft week in India. The proposal is still alive, and occasionally, it is discussed at friendly meetings on the sidelines of the cleft conferences. It is apt and relevant to observe a cleft day or week or month all over the world. During this week, every cleft surgeon and cleft care centers should dedicate his time and energy for the cause of CLP.
One needs to assess or do a survey to find out what modality works better in a specific population. We need to identify factors that prevent us from delivering good outcome. Our parents are either unaware that these anomalies are treatable or they are ill informed in terms of the cause, time of primary and secondary surgeries, type of surgeries required and available, and overall rehabilitation. We should find ways to improve the communication between the caregivers and the community. Identifying a month or a week is a very positive step toward improving the care of these children. One should organize consultation camps, awareness programs, training and educational activities, interviews, continuing medical education, updates, workshops, etc., for lay public and caretakers of children with CLP. This will be beneficial to all concerned. Hence, let us start it in India and hope that it will be implemented in other countries also where it does not exist.
In most of the developing countries, free surgical in camps and writing in newspapers are effective modes of campaign. Now, it is the era of information technology. One can design apps, send messages, etc., on the good practices in the care of these children. One can plan short videos for the correct feeding technique. There could be motivational messages from prominent persons in public life. One can post short videos or presentations on the importance of early reporting to the hospital and care of children right after birth.
We notice that the general population has reservations about the care of children with deformities. One needs to emphasize that these are treatable anomalies. The children with facial anomalies are normal and are comparable to other children in the family. They should speak to the specialist as soon as possible after the birth of a child with CLP.
What should be our target? The parents of children with cleft are the right persons to educate. In our country, even the primary caregivers, pediatric physicians, general physicians, and family physicians also need to be educated. Cleft India Parents Association is a step forward. This is an organization of parents of children with cleft, for the parents of children with cleft. This organization and similar other organizations need to work hard. However, this is not enough. We need to have a concerted effort in this direction.
Does it make a difference? Yes. We have observed that whenever a camp or awareness programs are organized, the patients from the remotest corner come to these events. It may be because of propaganda or may be because of incentives or whatever the reason it has a positive outcome. Hence, I wish that the concerned establishments or organizations will take this up. Certainly, the proposal will be reignited in the forthcoming meetings of the Indian Society of Cleft Lip Palate and Craniofacial Anomalies.
We are aware that cleft lip and/or palate can be successfully treated by a combination of surgery and rehabilitation. Hence, no child should be left without the treatment and support of skilled and caring cleft teams, and we work diligently to make that happen. We advocate comprehensive cleft care, which means quality reconstructive surgery, as well as ongoing rehabilitation. To make it happen, I propose to celebrate July as cleft month throughout the country and later in the world.
Education is the most powerful weapon which you can use to change the world.