Yayasan Senyum Bali

Fact Sheet

Mission:

The mission of Yayasan Senyum is to reduce the suffering currently associated with craniofacial abnormalities and to improve quality of life by facilitating the delivery of health care to people with craniofacial disabilities in Bali and other Indonesian islands in partnership with local and international health care professionals.

About Us:

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 an Indonesian 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-op procedures at either RSUP Sanglah or at private hospitals in Denpasar, where Bali’s three Plastic Surgeons conduct their surgery. The Foundation’s Patient Coordinators assist the patients through the pre and post operative procedures. After their surgery, patients spend two or three days in hospital for post-operative 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.

Our Services:

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.
• Emotional and logistical support as patients and their attending family members progress through the health care system.
• Full board for the duration of their stay at the Smile House.
• 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.

Why we are unique?

Yayasan Senyum Bali offers patients a service which covers more than just the operation. Beside the services mentioned above, the foundation also runs a Patient Recall System to enable patients to attend subsequent surgeries, check-ups and follow-up treatments at the hospitals/medical facilities where their operations were performed. A high percentage of patients with craniofacial abnormalities usually require subsequent surgeries or dental work, speech and, sometimes, hearing therapy. The Patient Coordinator is looking after the smooth running of this process and guides the patients every step of the way.

Over the years the Foundation has established excellent credibility within the health care industry in Bali. This is due to recognition of the work that Yayasan Senyum Bali is doing for the community, staff dedication to the patients as well as constant liaison with Medical Advisors who consult on all medical issues. Other factors include:

• A long standing working relationship with RSUP Sanglah.
• Introduction of the World Health Organization (WHO) Cleft Protocol standards, ensuring patients receive treatment which complies with this protocol. All operations on Yayasan Senyum Bali patients are supervised by highly respected Plastic Surgeons who conform to the WHO Protocol.
• Facilitation of regular training seminars for Indonesian doctors & speech therapists. These seminars are led by Australian experts in craniofacial examination & treatment skills.

Yayasan Senyum Bali by Numbers

Since it started in 2005 the Foundation has helped in excess of 520 patients with craniofacial abnormalities. The patients with craniofacial abnormality which affecting their health, they may qualify for a letter of poverty (Surat Keterangan Tidak Mampu) are our priority. Based on our patient database from 2005 up until 2010, these are the information breakdown below about our patients

The Operation:

Bali – Cleft lip and/or palate patients assisted by Yayasan Senyum have their operations either in Bali, at the public hospital, RSUP Sanglah, Denpasar or at one of the private hospitals by Balinese surgeons.

Adelaide – In association with Professor David David of the Australian Craniofacial Unit, Yayasan Senyum sends patients to Adelaide for operations which cannot be performed locally in Bali.

Twice a year Professor David comes to Denpasar to hold a clinic with DR. AA Asmarajaya, RSUP Sanglah’s senior plastic surgeon. More serious craniofacial cases are assessed at this clinic and patients are selected for operations in Adelaide.

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.

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.

Current Projects

School Project for Raising Awareness

The main purpose of this project is to raise awareness from the students and also their parents that there are still lots of people, especially children, suffer from craniofacial disabilities. Most of them are cleft lip and cleft palate which was easily cured if they get adequate treatment, but not so in reality.

The situation above is mostly due to the poverty or lack of information sufficient for the patients to access help. In this project we also introduced about Yayasan Senyum Bali’s mission and invite the students to participate and help the children patient by sharing and publishing the foundation to the community and also donating their pre-loved or unwanted stuffs to be sold at the Smile Shop.

FAQ’s

What is a cleft Lip and Palate?

Lips and palates develop from separate parts during the first 3 months of pregnancy. Normally, the left and right parts of the lip come together or “Fuse” creating a normal lip. The two vertical lines on the normal upper lip are created when the left and right parts fuse. In a similar way, the left and right parts of the palate come together to create a normal palate. A front-to-back line along the roof of the mouth can usually be seen where the joining has occurred.

A cleft lip is a defect in the lip where the two parts from which the lip develops have failed to fuse. A cleft palate is a similar defect in the roof of the mouth where the two parts from which the palate develops have failed to fuse.

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 esulting in misshapen or absent organ. Each abnormality needs to be evaluated individually and treated accordingly.

Craniosynostosis is another common abnormality which includes the skull bone. There is a defect in the growth of one or more skull bones leading to deformation of the skull which also affects the shape of face. Occasionally these deformities lead to increase in tension in fluid spaces of the brain and may affect the growth of the brain. It can also damage the vision. Many children form more complex deformities.

The common soft tumours of the craniofacial area are vascular malformation, neurofibromatosis and other facial bone tumours. These tumours can extensively involve the facial structures and facial bone. They may need extensive resection and major surgery.

How to feed Cleft Babies?

There is no best method to feed your baby. It is often necessary to try several methods before deciding which one is best for both mother and child. Quite often food comes down the nose during feeding. This is nothing to be too concerned about. Simply wipe it away and continue feeding.  Children with only cleft lip will able to such without much problem.  However, children with cleft palate will have a problem with sucking.

However feeding needs patience and efforts from mother and baby. Breast feeding is best, but the majority of babies are not able to suck enough.  If the child is not able to suck, the breast milk should be extracted by a breast pump and given by bottle or spoon.

Bottle feeding is good if good hygiene and sterility of the bottle and teat is ensured. If not, spoon feeding is a good method.  Both methods are best used with the baby in a fairly upright posture, resting on the mother’s arm. This posture reduces the amount of milk passing up into the back of the nose. For bottle feeding, enlarging the hole in the teat allows milk to flow more freely and avoids the baby having to work hard. Milk should flow out of the bottle when it is turned upside down. Alternatively, a soft squeezy bottle can deliver milk at a rate that matches the ability of the baby to swallow.

By far the greatest problem with feeding is wind. Because babies have difficulty sealing their mouths around the teat, they tend to swallow a lot of air while feeding. To help reduce this tendency, hold the baby more upright while feeding and ensure the milk is delivered to the back of the mouth, so it can be swallowed easily. You will need to burp your baby frequently during the feed, and most importantly, make sure the baby has no air at the end of the feed, before being put down to sleep.

The feedings should be given about every 3 hours to start a pattern. If the feedings are longer apart than that, the baby may get too hungry, and may not feed well. The feedings should take anywhere from 20 – 40 minutes. If it takes longer than this, the baby may be working too hard. Try enlarging the hole in the teat.  On an average, the child needs 2-3 ounces/pound/day of milk.

Other liquid diet, semisolid and solids are started like in a normal baby.  Some solid or liquid food will regurgitate through the nose, but this is nothing to worry about.  This will stop after palate repair.  Follow the instructions of the doctors for the postoperative feeding.

Will the 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 the case of other Craniofacial deformities (other than Cleft Lip & Palate), the cost of each surgeries are vary depending on each case. Please email us for more detail information info@senyumbali.org

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