March 2007 / Bali Advertiser

By Ibu Kat

There’s a shadow behind the bright smiles of bali’s children.

For about every 600 live births in Indonesia, one baby will be born with a cleft lip or cleft palate. The cause isn’t known, but malnutrition and lack of folic acid in the mother’s diet may be factors. Some deformities, like a simple cleft lip, are cosmetic and easy to repair. Cleft palate, where the bone at the top of the mouth has failed to close, is more serious as it involves the teeth, bones, hearing and ability to speak. Babies with this deformity can’t feed properly and are in danger of aspirating milk and food into their lungs through cleft.

Without surgery, most of these children will never grow up to lead normal lives. The dramatic before and after pictures of children who have had their deformities repaired tell poignant stories of rescued lives.

Over 2,000 children from Bali and Lombok have had their smiles rescued, but there are thousands more in the shadows.

The John Fawcett Foundation has repaired about 1500 facial deformities in Bali and Lombok and continues to treat cases as they are encountered. The Rotary Club Nusa Dua started a Cleft Lip and Palate Project in 1994, working with John Fawcett and financing about 350 operations until 1997. From 1998 to present the Club has solely financed about 526 operations, and by the end of this year will have provided 1 billion rupiah to the project.

Now there is a Bali-based organization dedicated to the treatment of craniofacial deformities. Yayasan Senyum (Smile) Bali was established in 2005 to serve as a bridge between Sanglah Hospital, the regional public hospital and the Australian Cranio-facial Institute in Adelaide. The Institute is headed by Dr. David J David, who has worked for over 20 years in Indonesia and established cleft centres in Jakarta and Surabaya. The goal is to open such a centre in Bali which will also serve Lombok. Dr. David and his anaesthetist and nurse travel to Indonesia twice a year to hold clinics, perform the life-changing surgery and train local hospital staff in special procedures such as nasendoscopy.

Dr. A.A. Asmarajaya, trained by Dr. David, is the only plastic surgeon in Bali and is Head of Surgery at Sanglah Hospital. This kind man performs the surgeries, with Rotary Club Nusa Dua and other donors covering the nursing, medicine and other associated costs. Although a cleft lip is more unsightly, it is the easiest to repair and can usually be done when the baby is six months old. Cleft palate is much more serious, and because it’s not so visible the condition is often neglected. Cleft lip and palate operations performed in Bali cost between US$ 150 and $400.

Senyum Bali is headed by Mary Northmore-Aziz, an Indonesian citizen who has been working with people with cranio-facial deformities in Bali for over ten years. She is the inspiration behind the Smile Shop in Ubud, Bali’s first thrift shop, and the Smile House, which offers safe pre and post operative accommodation and food to surgery patients and their families.

Smile House, located near Sanglah Hospital, was made possible by a grant from a generous Singaporean donor whose gift covered the contract for two and purchased the furniture. The clean and cheerful residence is managed by Rusmini, whose own severe facial deformity was repaired recently in Adelaide. She cooks, cleans and provides comfort and reassurance to the patients’ families. She and Oki, the Senyum Bali coordinator, are funded by the Smile Shop in Ubud. Sue Frost, another full time member of the team, is funded through the Australian government AVI programme. She sets up and maintains databases, patient records and publicity material and assists in clinics and patient care.

Complicated cases must be sent to Australia and there are currently seven patients in urgent need of treatment in Adelaide. This treatment is free, courtesy of the Government of South Australia, but patients are asked to contribute A$1000 towards their costs, and A$1500 more is needed for each patient to support associated costs such as passports, flights, etc. These patients will require extensive surgery and treatment for cranio-facial, orthodontal, hearing and speech conditions.

The Smile Shop in Ubud, opened in December 2006, has proved a popular fund-raising arm for the Yayasan. Businesses and individuals donate high-quality new and lightly used stock which is snapped up by the local community. In the 48 days it has been open, the shop raised 32 million rupiah. Volunteers currently keep the shop open three days a week; additional volunteers will enable the shop to open more often. Please call Peta at 0361 7857366 if you’re willing to commit to a 4 hour shift each week. The shop is always in need of stock, so please drop by with good-as-new clothes, towels, sheets, DVDs, children’s books in Indonesian and other articles.

Generous donations in cash and kind from BIWA, the British Community Committee in Jakarta, Maspion, Tropical Living and the Australian Consulate General have helped support Senyum Bali to date. Mary’s wish list now includes the salary for an Indonesian social worker who can counsel the families during the often-frightening process of travelling to the city, negotiating the complex bureaucracy of the hospital and dealing with the surgery. She’s also searching for funds to send the seven urgent cases to Adelaide.

It doesn’t take a lot of money to bring a child with a cranio-facial deformity out of the shadows. Check out the following websites for truly inspiring documentary evidence of how a single inexpensive surgery can change a life.

NOW! Bali Magazine, Bali / September 2011

Yayasan Senyum, the Smile Foundation of Bali, began to assist Indonesian people with craniofacial disabilities, including cleft palate which can seriously impair basic life functions like eating and speaking. Through the foundation, founder Mary Northmore-Aziz aims to give everyone a good reason to smile.

 How did you come up with the foundation?

Craniofacial disabilities are not problems that you see everyday because people tend to protect their children and loved ones from unwanted attention. People with craniofacial disabilities often feel like outsiders and may sense that no one in their home community knows what it’s like to have their experience. A face is difficult to hide and a disfigured face is difficult for others to overlook.

In Many countries, craniofacial disabilities are treated shortly after birth, but is not the case in the poorer parts of Bali. Craniofacial disfiguring, but can also lead to difficulties with nutrition and communication. As such, treatment is essential. However, treatment is not just expensive, but it can involve extensive travel from the individual’s home environment as well a complex bureaucratic process.

This is exacerbated by a number of factors: many of the people requiring treatment are poor, often illiterate and they may not even speak Indonesian. So not only do they have trouble paying for treatment (which may also involve accommodation and travel expenses), but when they arrive for treatment they have trouble completing admission forms and understanding the processes which need to be undertaken. In addition, many patients have not previously left their home villages, making the experience particularly difficult and traumatic, which is strengthened by the social isolation caused by their disabilities.

It was for these reasons that the foundation was founded; to help the people with craniofacial disabilities, who are simply to help themselves. NOW! Bali went to speak to Mary Northmore-Aziz about her mission.

What are the Craniofacial Abnormalities?

Craniofacial abnormalities are defects or deformities involving the face and the skull. These abnormalities occur when the growth of skull and facial bones is affected leading to deformation of shape of the head and the face. Long facial clefts can also occur involving the lip, cheek, eyelids and facial bone leading to sever facial disfigurement. Some of these abnormalities may involve eye or ear resulting in misshapen or absent organs. Each abnormality needs to be evaluated individually and treated accordingly.

What does the foundation do?

The Smile Foundation facilitates operations for cleft lip and palate and other craniofacial deformities, due to birth defects, accidents, or tumours. The organization helps poor people from Bali, Lombok and further east, and raises funds for operations whether in Bali or Adelaide, Australia at the Australian Craniofacial Unit.

Will a child be normal after treatment?

The aim of treating children with cleft lip and/or palate is to achieve normal looking and normal sounding well adjusted individuals. The cleft child is likely to have the best possible result in achieving this aim if treated by an organized, well trained multidisciplinary team. When treated at the proper age, normally they have good results. They will be like normal children except a small scar on the lip and will need supervision until adolescence. In addition they might need appropriate intervention by the Plastic Surgeon, the Dentist, the ENT surgeon and the Speech Therapist at appropriate intervals according to individual needs during childhood and adolescence.

How much do the Operations cost?

Normally the cost of these operations would run into several million rupiah for each surgery. However several cleft operations through Yayasan Senyum Bali are sponsored by a non profit organization called ‘Smile Train’. Poor patients who cannot afford surgery can be operated completely free of cost under the Smile Train project. In case of other Craniofacial deformities (other than Cleft Lip & Palate), the cost of each surgeries are vary depending on each case.

Has it been easy to find sponsors and/or supporters?

Much of the funding comes from donations from both individuals and organizations. For example, the Australian Consulate General in Bali, working with the Smile Foundation, provided funding for seventy children to have craniofacial surgery. Charity events, such as Adam Gyorgy’s piano performance in 2006, are also important to the foundation.

Additional funds are raised from the Smile Shop, which sells second-hand goods, largely from expatriates, but also increasingly old stock from local shops and linen from hotels. The Smile Shop is staffed entirely by volunteers.

Tell us about yourself. What brought you to Bali?

The first time I came in 1983, I was working in Hong Kong, so it was quite near. Lots of my friends in Hong Kong used to come here, and they were all a bit shocked that I’d never been here because I’d travelled a lot, travelled all over Asia, but I never came to Bali. And so they all said to me, “You’ve got to go to Bali.” The next thing I know was I fell deeply in love with the Island.

2010-06-28 / HEART OF BALI

The Smile Foundation of Bali (This article is published in THE MAG 26 – JUNE 2010)

by Rahman

Yayasan Senyum Bali

Yayasan Senyum Bali (The Smile Foundation of Bali) is an independent, non-profit organization striving to bring health care to people with craniofacial abnormalities. It was founded in 2005 by the Ubud resident Mary Northmore, who is also the Foundation’s Chairperson. The Foundation has an honorary board and seven staff, who look after all administrative work and patient coordination for hospital admissions.

The Foundation deals with patients suffering from disabilities such as cleft lip and palate, as well as a wide variety of other craniofacial disabilities. Most of these patients come from the mountains of Bali and other islands in Eastern Indonesia, where appropriate medical treatment is extremely unlikely.

Patients are housed at the Yayasan Senyum Bali Smile House in Denpasar while completing pre-operation procedures at either RSUP Sanglah or at private hospitals in Denpasar, where Bali’s two Plastic Surgeons conduct their surgery. The Foundation’s Patient Coordinator assists the patients through the pre and post operative procedures. After their surgery, patients spend two or three days in hospital for postoperative care then return to the Yayasan Senyum Bali Smile House for a similar period of recuperation before returning to their villages. During their stay at the Yayasan Senyum Bali Smile House, patients and their escorts (i.e. one family member) are provided full board.

All financial aspects of Yayasan Senyum Bali are administered by a qualified accountant, and independently audited on an annual basis. The Foundation runs solely on donations and the support of the volunteers. Yayasan Senyum Bali works to raise funding for craniofacial surgeries and to establish partnerships with various organizations and medical facilities to provide logistical and medical support for the patients.

These include:
•    Return transport to attend hospital appointments.
•    Accommodation at the Yayasan Senyum Bali Smile House in Denpasar – before & after operations in Denpasar.
•    Emotional and logistical support as patients and their attending family members progress through the health care system.
•    Making all necessary arrangements including applications for passports, visas and flight bookings to Australia for those severe cases in need of surgery at the Australian Craniofacial Unit in Adelaide, Australia.

Smile Shops

Yayasan Senyum Bali operates two charity shops (The Smile Shops): one in Ubud, which has been in existence since 2006 and another in Denpasar, opened in March 2010. These Smile Shops sell donated goods both new and used and have been highly successful in assisting in the generating of funds. The funds provided by the shops cover all Yayasan Senyum Bali administrative costs. This means that all donated money is spent on directly helping patients. Both charity shops are managed by a shop assistant and a number of dedicated volunteers who work various rosters to enable the shops’ smooth operation.

Trisha Sertori, Contributor, Gianyar

In a world where appearance is a passport to jobs, marriages, first dates and social acceptance, having severe facial deformities can bar people from ever entering the life most of us take for granted.

Add poverty and little access to health services on top of disabilities such as cleft and lip palates or severe deformities, such as the Elephant Man Syndrome or Goldenhar Syndrome, and the chance for sufferers from remote regions in Bali and Lombok to receive medical treatment was, until a couple of years ago, almost nil.

Today these are the people Yayasan Senyum or the Smile Foundation seeks to help across Bali and Lombok. People who, if born in another country, would have had these disabilities treated as babies; others caused through infection would never have occurred.

“”The simple act of eating and drinking can be denied to these people; looking in the mirror, putting on makeup, feelings of being punished for unknown sins, being disadvantaged in everything. The ideal of beauty operates all over the world and aberrations (like these) are not well received,”" said long time Bali resident Mary Northmore-Aziz, who two years ago, with an ever-growing band of volunteers and supporters, established Yayasan Senyum. The foundation helps arrange reconstructive surgery for sufferers of severe facial disfigurement and cleft and lip palate across Bali and Lombok.

“”Yayasan Senyum began two years ago when Dr David David of the Australian Craniofacial Unit, asked me to set up a foundation to track down patients in need of facial reconstruction,”" Northmore-Aziz said. “”Senyum then guides people through the process of pre-and post-operative assistance, getting some to the Adelaide Women’s and Children’s Hospital in South Australia and others into Sanglah or Dharma Yadnya hospitals in Denpasar,”"

Patients and a family member are housed at the foundation’s Smile House in Denpasar during trips to the city for medical treatment. Rental for the Smile House was donated by local Balinese Sanford Chee and opened in January 2007. The house acts as a halfway home for patients with the family atmosphere helping to reduce the stress and fear of the hospital process.

And that process can be terrifying for patients and their families from remote villages who may never have left their homes and are already socially isolated and traumatized by their facial disfigurements.

“”These people are often without information. Many can not read or may not speak Bahasa Indonesia. Poverty is a lack of any resources. Not just money, but including the information we need to cushion the hard times. Because of that lack of information when these people decide to have surgery they only know that decision will be the forerunner of a very frightening and painful experience,”" said Northmore-Aziz.

Walking hand-in-hand with patients through the chaos of hospital registrations, passport applications, visas, blood tests and more is one of the many ways Yayasan Senyum cushions the fear and confusion faced by patients at the foundation’s Smile House.

“”Smile House has a coordinator, Oki Made Widawati. She walks people through the process; the reading of admissions forms, how to go for blood tests, where and when to go to X-Ray. These things are all very frightening and confusing. Having the coordinator journey through this with patients eases those fears,”" Northmore-Aziz said.

She adds that patients who arrive in Denpasar face not only the fear of surgery and possibly travel to a hospital in a foreign country, but also the fear of being far from home, possibly with language barriers, different religious practices and genuine culture shock, all these fears are calmed by Smile House’s coordinator.

“”There are also the irrational fears felt by not only patients, but also by family and community. We had one young girl who was in hospital in Adelaide for so long a rumor went around her village that we had sold her. Having a family member so far from home can be very frightening. Trusting people they do not know; setting out from a village into the unknown,”" said Northmore-Aziz of the trauma faced by patient’s communities.

But for the dozens of people helped by Yayasan Senyum, once the rounds of operations and hospital stays are over, life never looked so good.

“”Rusmini had lost much of her cheek bone and jaw to infection when she was a child. Today she works at the (Smile House) center and wears lipstick. She never wore lipstick until she was 32 years old. She did not want to draw attention to herself and always covered her face. Surgery gives these people a new life. They can’t stop smiling and they chatter nonstop, they are so delighted with their lives. They are filled with confidence, pride and courage,”" Northmore-Aziz explains.