Cleft Lip and Palate Program Cambodia
One in every 400 babies born in Cambodia has a cleft lip or palate. This is an incidence between 50 and 100% greater than most of the other countries in the world.
The affliction is not seen much in developing countries as it is almost immediately repaired after birth. However, in Cambodia it is a grave sentence. The cleft lip/palate baby rarely can suck at his or her mother’s breast, nor at a bottle. He or she will most probably be malnourished as a consequence. He/she will be hidden away by his/her parents and not shown proudly around as other babies, and as self image starts to develop, the young child will realize she/he is different. He/she will be laughed at, assumed to be “simple,” alienated, and have few, if any, real friends. She or he will never have a boyfriend/girlfriend, not be included in games, and not go to school. Later as an adult, none but the most menial jobs will be available. Always, the victim will hold a cloth over his/her mouth and hide his/her face away from others. Socially, economically, psychologically and in family terms, the cleft lip/palate sufferer will be severely debilitated, an affliction which will affect his/her entire life.
For a cleft lip, a relatively simple and cheap operation shortly after birth or later will prevent all of this. The operation costs (materials and local costs) are around USD 50. Cleft palate operations are usually more complex to repair, but are also possible for a somewhat higher cost. However, cleft lips outnumber palates by around 10:1.
Rose Charities has been operating on cleft lips and palates since early 1999 and has now established a sustainable infrastructure to expand this work, drawing mainly on Cambodian expertise and personnel. It is estimated that there are around 30,000 cases of cleft lip or palate in Cambodia, with around 1,000 new cases arising yearly. There are no other full-time agencies or government facilities within the country specifically focused on free cleft lip and palate operations for the poor and in particular, children. The reality of the Cambodian health system is that it itself is severely debilitated, lacking in funding and resources and operating effectively as a “private sector” network of very low standards. Patients must pay heavily for adequate services and especially for surgery, if it is available at all.
GOAL: ELIMINATE THE CLEFT LIP & PALATE
AS A SIGNIFICANT PROBLEM IN CAMBODIA
It is the aim of Rose to entirely eliminate the backlog of cleft lip and palate in Cambodia and establish a system whereby small babies may have their lips and/or palates repaired at their proper (early) time. The process will involve both educating the poor of Cambodia and establishing proper screening processes and operating facilities. In the latter case, training of health professionals and the establishment of cleft lip operating teams will be of high priority. It is estimated that with adequate funding, the process can be completed within 10 years at an overall cost of around 35 USD per case or around 100,000 dollars per year. The final result would be the establishment of a self-sustaining in-country system which will screen and maintain facilities for early cleft palate repair for new cases.
ROSE CAMBODIA (“OPERATION FIRST”
REHABILITATION SURGERY UNIT AND
The main hub of Rose-Cambodia cleft lip/palate operations is the Rose Charities/OPERATION FIRST, Chea Chumnas Hospital rehabilitation surgery unit. This small but highly functional unit lies within the Cambodian Ministry of Health Chea Chumnas Hospital in Takmau, on the outskirts of Phnom Penh. It contains an operating suite, post op. ward, recovery, consultation and treatment rooms, a small office, storeroom, etc. The concept of this unit was not to make a large, difficult to sustain “hospital,” but rather a center which can perform active surgery and act as the hub for the extension of services and teaching to provincial locations. For this purpose, the unit well achieves its aim.
Rose is a strong advocate of the “2TS” system.
1. TRAINING SUPPORT and...
2. TREATMENT SUSTAINABILITY
The main aims of Rose are twofold and based on “Empowerment.” (2TS)
- Empowerment of disabled people to be reintegrated into their communities
- Empowerment of the country to sustain low cost rehabilitation surgery in the future, by training health personnel (2TS)
Rose Charities in Cambodia implements “2TS” rehabilitation surgery programs in two centers.
1. Cleft lip and palate and general rehabilitation surgery with Operation FIRST at Chea Chumnas Hospital
2. Rose Charities Cambodia Eye Clinic
At Chea Chumnas, FIRST/ROSE maintains a core team of 3 – 5 Cambodian health professionals and assistants who work full or part time to maintain the services offered. In addition there are frequent visits from expatriate health professionals for varying durations (1 week to 8 months) throughout the year. It is found that this approach allows both for continuity as well as flexibility in expert assistance. Out patient consultations are held daily in which patients are screened for suitability for surgery or given (or advised of) medical treatments, if appropriate. Surgical procedures performed include those in the list above (Section on rehabilitation surgery) as well as any other which may be safely performed if any specialized experience is available (such as from a visiting team). Although cleft lip and palate repair is foremost, other surgical treatment is given, where possible, for burns, land-mine injuries, congenital deformities, etc.
The training of staff is very practically oriented with direct demonstrations, followed by the trainee’s supervised performance of the procedure or technique. The organizers of Rose Charities strongly believe that such direct practical involvement is by far the most effective way to transfer skills. Visiting experts are strongly encouraged to follow the same teaching concept (and invariably do).
The Eye Clinic screens over 1,200 patients per month and is able to assist them by, in most cases, sight restoring operations that number over 100 per month. It is Cambodia’s most prolific sight restoration for the poor. It is run entirely by Cambodians, for Cambodians.
ROSE BACKGROUND AND GENERAL INFORMATION
The name R.O.S.E. was formed originally as an acronym for “Rehabilitation Oriented Surgical Empowerment” (although this acronym has since been dropped in favor of simply “Rose” as all types of rehabilitation projects are now being undertaken). Its foundation was by individuals with NGO field experience in Cambodia and other developing countries who were appalled by the lack of surgical and medical assistance in the rehabilitation field in these countries.
Rose Charities was registered in B.C. Canada as a charitable organization (S-39911) in April 1999. Groups in New Zealand, the UK and the USA (New York) have subsequently evolved, although all are independent individual organizations with link with their sibling organizations to create a network. Rose Charities field projects, which are assisted by this network, are currently in Sri Lanka, Cambodia and Indonesia (in planning phase). Rose Charities has no specific founder. People simply add what they wish in terms of involvement into the network. Everyone has contributed.
All administration and much field work is voluntary. The Rose Charities office in Vancouver is, for example, within private, donated space. Rose Charities has no political or religious agendas.
“Tessiers Clefts are a particularly severe form of cleft palate (i.e. the clefting extends upwards and affects other areas of the face such as the eye sockets). Rose Charities managed to raise sufficient funds (and donated medical services and other logistical elements) to send the little girl above “Roewn Sokny” down to Adelaide, Australia for the specialist surgery needed.”
Little girl with cleft repaired by Dr. Rai (Vancouver)
What is needed…for cleft lip and palate victims in Cambodia (and other developing countries)
- A sustained, nationwide “2TS” program where proper staff and personnel are trained and, above all, sufferers. However poor, they can go to get low cost or free treatment/repair of their clefts.
- A network of peripheral services to help with the special needs of all cleft sufferers but especially children and young adults, who have suffered the inevitable social, educational, nutritional and social-economic deprivation that has ensued from their condition. This should include income generating projects as well as support at all levels, including counseling, skills training, education, microfinance, etc.
- A media promotion of awareness for the population in general about the condition of clefting, how and where it may be treated and especially how it is a relatively simple developmental variation which DOES NOT reflect on the value of the individual as a productive, normal person in any way.
All these aims are achievable…how…
Funds and resources: These are essential, but only part of the answer. Simply throwing funding at a problem will not solve it. What are equally needed are motivation, involvement, enthusiasm and awareness at the grassroots level of the real, actual, day-to-day problems of individual cleft sufferers.
Real human-to-human contact is priceless and irreplaceable. Small, individual or group efforts which address individual aspects of the problems are far more lasting, effective and efficient than large mega-initiatives which try to solve problems by bureaucratic processes.
Rose Charities grew up with the motto “Lets Just Try.” All of us, everywhere, whatever groups we belong to, want to help others. There are millions of ways we can do so and bring unmatched enjoyment to ourselves and our families at the same time. Giving and receiving are inseparably linked and there is equal joy in both. It’s a win-win situation!