Aida Edemariam reports on children with facial disfigurements

In some ways the script is terribly familiar, enacted nearly every night in some derivative, often digital reach of TV-land: Arianto has a problem with self-esteem. He is unhappy with his face. And he would like plastic surgeons to fix it, please, and thereby him. So they have a go. The screen duly fills with glinting instruments and operating table gore, with magic-marker lines guiding deep incisions into unconscious flesh.

Martin Kelly would be the first to recognise this characterisation of his role in Channel 4's My New Face. In fact, it is he who suggests the correlation: "It's Extreme Makeover for kids," he says, between operations at the Chelsea and Westminster in London. "It is! A little controversial, but it is. It's the most valid and important extreme makeover that anyone will ever have."

Arianto, from rural Sumatra, suffers from neurofi bromatosis, a nerve-system-related disease that became apparent as a tumour when he was seven; by the time he was 11 his face had become a twisted Picasso. The mockery at school was unbearable, so he left. His farmer parents couldn't support him, so he begged on the street. "I lost my confidence," he says, levelly, understatedly, to the camera, unconsciously echoing countless less afflicted makeover subjects.

Which is not to say that Kelly isn't ethically rather appalled by extreme makeover shows and easily sidetracked into a rant about them. But he also knows they - and he - exist on a continuum. As a top-flight craniofacial surgeon, he operates on the NHS - cleft palates, birth defects (being born in a developed country doesn't legislate against bad luck, it just means it can be treated sooner). He publishes research, and supervises PhDs. He also works privately, "a lot of rhinoplasty and facelifts and things" - he rebuilt, for example, Tara Palmer-Tomkinson's cocaine dismantled nose, and has his fair share of perfectly normal people who come in with pictures of celebrities, saying that they want to look like them (he had one last week, and refused to operate). "You have to pay your mortgage somehow. But that's not just why I do it - I enjoy the finesse of it."

Like many surgeons and doctors, he has travelled to less fortunate countries to offer his services - "surgical tourism," as he calls it. "The local NGOs would line up 25 clefts and 15 burns - and though I'm not really a dedicated burns surgeon , when you go out to these places and stray on to the burns ward you end up having to treat the kids because they're not being grafted, they're not being healed, and they're howling all night. It's horrific."

After the Taliban fell, he went to Afghanistan. He reconstructed a lot of noses - the Taliban had a penchant for cutting them off people they deemed to be liars - and one day in Kabul he met a baker with eight children. One of them stood "with a blanket over her head, a rather ET-like figure. And before I'd even met Hadisa, her father said, 'Her face is monstrous. Please, please, please don't say no. Say that you can help her.' They'd been rejected so many times he was almost weeping."

Hadisa had a full facial cleft, where the bones had failed to meet in utero, and her brain was pushing out through it. Pushing it back and closing the gap was too complicated and risky a procedure to do in Afghanistan. "I mean, this is surgery where you peel the face off the skull, you have to make all these cuts and move it around, the brain is softly pulsating away behind you." So Kelly, after returning to Britain and discussing her case with his colleague Norman Waterhouse, decided they had to bring her to the UK - and that they had to help others in her position.

Their charity, Facing the World, has so far operated on 15 children. This type of surgery can require a team of up to 25 - surgeons, radiologists, psychiatrists, audiologists, prosthetists, theatre nurses - and is not cheap: one 15-hour operation on Arianto would cost £100,000 if all involved did not work for free, on weekends. The only costs are the hospital bed, and the wages of Sarah Driver-Jowitt, the ebullient South African who is the one full-time employee of the charity, and searches the world for deserving cases.

There was Ali Hussein, for example, an Iraqi boy, half of whose face had been sheared off by an American rocket, and whose father was suffering from post-traumatic stress disorder. "We didn't know until we took him in to see Ali, who had a little bit of bleeding," says Driver-Jowitt. "He passed out. Every time Ali bled his father would pass out, which was incredibly humiliating for him because he's this proud Arab man. "

Some do not make it to Britain - they are too far gone, or, in the case of one Chinese child, the government refused to grant a visa until it was too late. Some are rejected by the surgeons: one of the hardest things to watch in a programme with a high quota of such moments is the distress of a young Filipino mother whose child was eventually turned down because not only was his face a mass of tumour, but scans could not detect a functioning brain at all. That is one of their criteria: essentially, that there is hope for the child. They cannot afford to get too involved emotionally, otherwise "you'll be in tears all day, you won't be able to see yourself operating." Sometimes they relax other criteria: Zainab is a Palestinian baby from Gaza with a fairly straightforward cleft who would have been referred on in other circumstances, but the Israeli hospital across the way refused to treat her because she was Palestinian.

The trauma most of the children suffer goes well beyond being uncomfortable about looking in the mirror. Hadisa, from Afghanistan, and Ney Ket, a Cambodian child whose brain was leaking through his nose into his cheek, were called "devil children" and stoned in the streets. When Ney came to Britain he was so frightened of other children that he would squash himself into corners, face to the wall, or bend his head to the floor, in foetal position, dragging Driver-Jowitt down with him as a shield. Eyerusalem Endale, an Ethiopian girl operated upon a couple of years ago, suffered clinical depression, going to bed at all times when she was not forced to go to school, "and that's not normal in a 10-year-old," notes Driver-Jowitt, drily. Their parents often feel terrible guilt. Arianto's father, for example, who walks miles to visit his son in the orphanage that provides the care he cannot afford to give, has a much milder form of the disease and says, "I blame myself for what happened to my son." Eyerusalem's father, who has health problems himself, pledged to God that he would do penance until she was cured; he slept on the hard floor instead of his bed for nearly nine months.

It is a truism, but these cases graphically illustrate that our faces determine our futures. We judge each other in the first milliseconds of meeting, and how we are judged determines how we are treated, aff ecting all our opportunities - from education, to work, to friendship and love. Furthermore, "it's been very clearly demonstrated in psychological studies," says Kelly, "that there is an almost knee-jerk interpretation, and assumption, that behind the mask of facial difference there must be a child who is less intelligent, less kind, less receptive, less likely to progress. And the child feels this rejection and faced with it from all sides, will tend to internalise it. And it tends to produce in the child a feeling they're incompetent, that they can't cope, can't be good. Another thing that happens is that their physical deformity tends to paralyse their physical possibilities in their minds, and they feel physically impaired - that they can't play football, for example - whereas in fact, of course, they can. It's very restrictive.

"The other very interesting thing is that you assume that this is hardwired - that the progress of a child born like this will always be restrained. But it's not - it seems to be a problem of adjustment. In other words, if you make these kids look normal, or half-way normal, it opens up their world. It really does. In comparison, of course. It's just like opening up the shutters on a dark house." Sometimes the change in their demeanor occurs within days.

It is not just the physical surgery - brutal, bloody, full of saws and chisels and thread and metal structures Waterhouse refers to as "mini- Meccano" - that makes the diff erence. Driver-Jowitt quickly establishes herself as a friend and confidant and, briefly, surrogate mother (most of the children are away from home for three months, without their mothers), generous with big hugs and games and questions - and with other resources. She organises host families and volunteers who speak the same language, play groups with the two surgeons' children, who are used to it by now (Kelly, who was once a male model and plays in an all-plastic surgeon rock band, has two children with the actress Natascha McElhone), outings (Arianto went sight-seeing in London, and to a premiership football game), and, crucially, schooling. Arianto was entirely illiterate and innumerate when he arrived for his first operation, but by his second was able to read and write .

The first operation, two years ago, removed 1kg of tumour from Arianto's face; the second removed 600g - "like two litres of milk," says Driver-Jowitt cheerfully. His jaw was reconstructed, he was given a fake eye, new teeth. And yet normality can only be measured in comparison with his plight before; about other 18-year-olds it is best not to think. "Ari is so difficult," says Kelly. "There is almost no face there - there is a case for getting rid of one side altogether and starting again."

Kelly is on the face transplant team that has hit the headlines in the past couple of weeks; he helped to design the prospective surgery, and I ask if Arianto might eventually be a candidate. The answer is a categorical no. "Facial transplant must be, and must remain, only for a pan-facial burn. Never for these kids. It just isn't, at the moment, something we can load on to a child." Furthermore, "if you imagine the face as a set of modular elements, some elements, usually, are just out of line" - thus fixable. And, anyway, what to do about growth?

There are success stories; Dok Chan, from Laos, who once had her brain coming out of her nose, has just announced her engagement. Ney's mother, says Driver-Jowitt, "said she couldn't believe how much like his brother he looked. It hadn't occured to her that that would be an end result." Eyerusalem, who had a 100% chance of dying if left untreated (the tumour was slowly blocking off her breathing), and an only 10% chance of survival if she'd been operated on in Ethiopia, lights up the entire film. The team are fond of all the children but they seem to have particularly fond memories of the girl who refused painkillers after her operation (on the grounds that she had recieved enough largesse, and the drugs should be kept for other kids), and instantly reverted to natural high spirits. "Her father was so funny," says Driver-Jowitt. "He just said, 'It's so tiring! She doesn't want to go home, she wants to walk everywhere. Going to the shops takes 10 times longer - she has to talk to everyone!' He said it was as if his daughter had been born again as the person she should have been."

But afterwards it's Arianto who really sticks in the mind, who is particularly troubling, with his wistful "they say I'd be good-looking if I didn't have this disease", his inability to entirely disguise hope with stoicism: "I like my new face. I thought I would look like the other kids, but I understand the surgeons have done all they can for my condition." The surgeons feel this too - a frustration and disappointment - though partly due to the fact that the Arianto on screen is still somewhat swollen after surgery. "There's been one other case published, like Ari," says Kelly, "a very similar case, by a Japanese surgeon - he operated nine times, and of course the process is seven times further down the line. But the tissue can only take so much insult at any one time. You need to go back, and back, and chip away and redesign. We had two big chunks of it, and my regret is that we don't have nine times. We can't afford nine times, really - we have ceilings and limits, like anyone else." And all involved must also realise that "we can't recreate fine nerves and muscles and the delicate balance of tissue relationships in a child's face. Surgery in a way is quite crude - no way can we give Arianto the expectation of a normal side to that face."

They intend to do at least a couple more operations, however, and "we'll look after Ari for ever". He wants to be a bike mechanic, and they've bought him a Honda, "so that Ari becomes the great bike mechanic in the village. So there's that, even though he's not perfect ... " But as Kelly trails off, the expression on his face belies his words.

· My New Face will be shown this Wednesday at 9pm on Channel 4. To find out about the charity, go to www.facingtheworld.net

Thanks to guardian.co.uk who have provided this article. View the original here.