Putting a Smile on New Faces

Sufferers of severe facial disfigurement and cleft and lip palate across Indonesia can face malnourishment, speech problems and are often socially isolated and traumatised by their facial disfigurements.
British-born Indonesian citizen Mary Northmore, who has lived here since 1985, is the founder of Bali’s Yayasan Senyum – Smile Foundation – a non-profit organisation that since 2005 has treated close to 600 people with craniofacial abnormalities. She spoke with Carla Albertí de la Rosa about the difficulties sufferers face and how the organisation helps them to have a better life.

What’s the percentage of people in Bali with cleft lip and palate? How about the rest of Indonesia and is it more common in some parts of the world?
What Professor David David (head of the Australian Craniofacial Unit in Adelaide, South Australia), our great advisor and one of the world’s great craniofacial surgeons, says is that it’s one in 600 all over the world. That’s the only figure that we will quote.

Children with facial abnormalities such as cleft lip and palate can be seen by the Balinese society as having done something wrong or angered the Gods; hence their abnormality is the result. To what extent does this stop families seeking treatment and are there other impediments?
The factors that we see are first of all ignorance: they do not know there is help. The second factor is fear; they’re frightened it’s going to cost them money they don’t have. They are completely intimidated by bureaucracy. The may not speak Bahasa Indonesia or they might be illiterate. They can’t understand the information even if they see it.
It’s a very frightening thing for a family to face but I’m not sure if there is in this an element of karma punishment. I haven’t seen it and all families are so grateful when they get help. It might be used perhaps as a way of justifying doing nothing. That may be the case. 

What are the main problems associated with cleft lip and palate and is there a particular age when it’s best to treat it?
The big problem is that if a baby has a severe cleft lip and palate they can’t suck; so when they’re breastfeeding they can’t get a good intake of milk. It may be that it comes out again – they can’t get it into their stomach and it can actually go into the lungs, so they can get lung infections or pneumonia. So it means that a baby with a severe cleft and in a poor village is in serious danger of malnutrition.
We have a rule that if the baby is five kilos and generally healthy we do the operation.

How many interventions do people who suffer from cleft-lip defects need and what is the process like?
It really depends how bad it is. In Flores two weeks ago there was a young man with a cleft lip and palate and they did the whole operation in one go. In that case that was really good but ideally you would do the lip at three months and five kilos and then you would do the palate later on. They might have a big gap in the jaw and so later, around the age of eight or nine, they need orthodontic treatment so the teeth fall in the right position.
Another thing that happens to people with a cleft disability is that they can’t make sounds properly. There might be a problem at the back of the throat that requires another operation. It really depends on the severity but generally speaking it’s a very long process. They could start when they are three months old and maybe are teenagers by the time we are finished. We wait for their head and their teeth to finish growing. It is a long-term commitment.
The lip is basically opened and they put it back together as it should be. They may have to remove some teeth underneath if they are coming out. And the palate is a straightforward operation, although it’s complex because we have blood vessels in the roof of the mouth. But they just bring the two sides together. It’s amazing. For the jaw operation they will take bone from the rib and shape it and put it in the jaw; very clever.

What causes cleft lip and palate and what are some of the challenges with particular types of cleft lip and palate?
They still really don’t know all the causes. One may be genetic. We have Balinese twins and they both had cleft palate; so there is a genetic element, but whether there is a maternal nutrition element we’re still not sure. There are different opinions about it but we do not have the data. You don’t see it in developed countries because it’s treated as soon as the child is born.
I’m not a health expert but one of the challenges involves education: teaching the parents how to take care of their child after an operation.

Are there any special considerations for patients prior to surgery? What about post surgery?
Prior to surgery the child must be healthy. And after surgery the parents will have to look after him, make sure he is well nourished and that he doesn’t exercise too much and wait for him to be strong again.

Apart from cleft lip and palate, what other conditions do you treat?
One which we have seen a lot is tumours. After tumours they need facial reconstruction. Another one that we are finding quite a lot is a noma. It’s when an infection goes into the mouth area. It could be treated with antibiotics but if the person doesn’t have access to antibiotics the result can be really horrible. It’s bacteria that eat the flesh. We are finding adults, and it tends to be more women, who for 30 years have not been able to move their jaws, who look horrendous, and it’s so sad because with antibiotics it could have just stopped. Those are the ones I’m particularly keen to find. Facial reconstruction can make such a difference.
Another big area is what’s known as birth defects. There are some things that happen to babies that make them very different. There are various syndromes, such as Apert syndrome or Goldenhar syndrome. Other, less common are accident or burn victims.

How many doctors work at Smile Foundation?
We don’t have fixed doctors but we work very closely with Sanglah Hospital. We work with the doctors in the department of plastic and neurosurgery and also with oncologists. And we work with Adelaide (the Australian craniofacial centre) for big cases.

What are the latest developments in the field and how have they helped in the treatment of craniofacial abnormalities?
We are the first organisation in Indonesia that has a nasendoscope; it’s an endoscope which goes down the nose and helps identify if there’s a speech problem because of a gap near the vocal cords. With endoscopes the patient will often be sedated. Here you don’t want them sedated; you want them to talk, to make sounds, to count. It goes down and sees what’s happening inside the throat. We have used it for about three years but we don’t use it very often. It’s only to be used by Professor David when he comes because it’s an incredibly expensive piece and nobody has yet been fully trained to use it.

What are your main sources of funding?
One of the biggest sources of founding is the Smile Shop in Ubud. We sell donated goods. We also get funding from the Smile Train in America. It’s an increasing amount of money as we develop our relationship and do more operations. Also, Rotary Club in Seminyak is fabulous. We also have a private Dutch donor who is very generous, who has given us a house very close to the hospital. Also, the Commonwealth Bank tennis tournament raises funds for us.

What’s the annual budget for the foundation? How much does it take to keep it going?
All I can say without having the figures with me is roughly Rp500 million (US$56,000) per year.

How many paid members of staff do you have, and what are their salaries?
About 12. Their salaries are good. I can’t say how much exactly.
 
Do you work with overseas foundations in terms of getting expertise?
Only with the Australian Craniofacial Institute and the Australian Craniofacial Unit.

Will Bali always have cleft-palate sufferers or will the numbers at some point decrease?
I think we are never going to see an end to it, not for a long time. The diagnosis may be made sooner but whether that would be good enough to prevent all cases from happening I don’t know.

What’s the average cost of a cleft-palate operation, and how long does it last for?
Bali now has free healthcare in certain circumstances. Maybe we don’t actually have to pay for medical costs. We always have the transport, accommodation and food costs. But we may do the operation in a private hospital if there is a long waiting list. We would hope it came to around Rp5 million ($560). It’s quick – maximum an hour.

Is there apprehension among the children and their families before an operation?
Yes. But the nurses know what they’re doing. It’s frightening for patients and parents and they have to be informed about the process.

Does the Bali government give you any funds to the foundation?
No, they don’t, although the Governor did give us a personal donation and is very supportive of what we do.

Have you treated patients from outside Bali?
Yes, from Sumba, Sumbawa, Flores – and now we are hoping Kupang in West Timor.

Do you see Smile Foundation branching out into other areas of healthcare?
No, I don’t, because other areas have other good foundations. So we have an awful lot to do in our area.

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