Crouzon syndrome

If anything could answer doubts about face transplants, pictures released this weekend of the world's first recipient must surely do it. They show that the woman in Amiens who received part of someone else's face to replace her lost nose, lips and chin looks normal. Unless medical problems spoil its immediate promise, this remarkable rescue of an individual from mutilation will give hope to tens of thousands of disfigured victims of burn and blast injuries and congenital disease, some of whom rarely leave home to avoid the misery of being treated as freaks.

Critics of face transplantation describe it as a 'quality-of- life' procedure as contrasted to a life-saving one. This implies that it is a relatively unimportant medical measure, not too far in status from cosmetic surgery. What this fails to recognise is that life is very much a matter of its quality, so the default reaction to anything that improves quality of life, especially for those denied the chance of ordinary activities and relationships by the way they look, should be to see it as indeed a life- saver " a saver of normal life " and to welcome it accordingly.

It has emerged that the 38-year-old Frenchwoman whose lower face was bitten off by her dog was unconscious when it happened because she had, according to some reports, attempted suicide and the dog was trying to rouse her. This news has deepened concerns about whether the woman will be able to negotiate the potentially grave psychological difficulties anticipated even for mentally robust recipients of face transplants.

This consideration has been added to other already expressed ethical concerns. One is whether the woman was in a position to give properly informed consent, in light of her traumatised state and the fact that her surgeons could give no assurances about the outcome. Another is whether she should first have been offered reconstructive plastic surgery. Transplant surgery carries far higher risks because the patient's immune system has to be suppressed to lessen the danger of donor tissue rejection. If the microsurgical connections of blood capillaries and nerves do not work, the donated tissue might die, leaving the patient in a worse state than before. Reconstruction is more conservative, though in theory transplants promise much better aesthetic results.

The medical success or failure of individual face transplants is one thing; the general psychological and philosophical questions prompted by them are another. It is these that have excited most debate in the three years since doctors first announced that face transplants are feasible.

One point that can be left aside immediately is the science- fiction possibility that a whole face transplant would result in the familiar face of a dead relative appearing unchanged on the front of a stranger's head. This grotesque- seeming scenario was the cause of much initial revulsion towards the idea of face transplants. But on the best suppositions, successfully transferring muscle, fat, cartilage and skin constituting one person's face on to the skull of another person would result in a greatly changed appearance because of the different shape and size of the underlying bone structure.

Moreover, the play of expression on the face would owe everything to the mind animating it. As actors " and portrait painters and photographers " know, a person's habitual look can be remarkably different from their appearance in repose. For an allied reason, a person's look is much more a matter of habitual expression " which means the way the face is composed by the emotions and the mindset governing it " than mere superficial structure.

There is accordingly little risk of a face staying the same when it is moved to someone's else's head. The real problem lies with the insides of the heads of wearers of new faces, for they have to deal with the considerable psychological challenges thus posed. Those challenges relate chiefly to the sense of self and of identity.

The task of refashioning a sense of identity is not as unfamiliar in human experience as one might think. It is in its way rather common, because it is not restricted to people whose looks have been changed by injury or disease. Ageing provides a powerful example. Many people become acutely conscious, at a certain point in middle life, that the visage in the bathroom mirror no longer conforms to the mental picture they have of themselves. Even in these cases the difficulty of adjustment should not be underestimated. It is a central component of the mid-life crises blamed for many a husband's flight. But in the case of injury or disease the adjustment required is greater; and greater again is likely to be the adjustment required following a face transplant.

For one thing, some recipients of donor organs find it hard to live with the thought that someone else's body parts are grafted to them. Some recipients of limbs have later requested their amputation because of a sense of the donated limb's foreignness. To a certain sort of imagination, having the whole or part of someone else's face attached in place of one's own just seems horrifying.

Second, the recipient of a transplant is not the only one who has to get used to it. In making their own adjustments, family and friends have to guard against anything in their own reactions that undermines the recipient's mental progress in accepting the change. That is likely to be hard work for the family, because for them it is not like having a new person in the house " relatively easy to accept " but a familiar person in a disconcerting guise.

Still, it has to be remembered that the transplanted face would (if successful) be giving a normal look to what, before the operation, was an appearance disfigured enough to warrant a transplant; and the difficulty of living with disfigurement, for both the subject and his family, is likely to be greater than getting used to a new but conventionally acceptable appearance. Moreover, the recipient would be buoyed by the positive aspects of the change, even though confronted with the difficult business of getting used to it.

That difficulty will concern not just the points about identity already made, but the new situation which the change of appearance brings into being. The complex factors that give a person his sense of self include the way others treat him, react to him, read his expressions, and respond to how he presents himself in public " for this, even in the first few seconds of a first encounter, provides others with much of the grounds on which they make their judgements about him. The self-image, in part built out of the way others approach him, will undergo a transformation only hinted at by recipients of radical makeovers in TV shows, or by people who disguise themselves as old folk or members of the opposite sex to see what it is like to walk in someone else's shoes. Reports by people who have tried these latter temporary experiments make striking reading; only consider what it must be like to know that the changes in question are permanent. To get a sense of these, one might have to consult the experience of transsexuals.

But if one thing is certain about the identity problem, it is that there is little question that recipients of a face transplant would feel that they had acquired someone else's identity. They might not feel that they look like themselves, at least at the beginning; but that is not the same thing as feeling that they look like someone else. For, in any case, large though the part played by appearance is, it is not the whole story about identity, in which memory, character traits and location in a web of relationships are important, too.

Early in the debate about face transplants, a victim of Crouzon's syndrome was asked what she thought about them. She said she would have one as soon as they became available, because the gross distortions of face and cranium caused by her genetic disorder meant that she was born with no eye sockets, and with her teeth in her sinus cavities. She had had dozens of operations to get a less abnormal appearance, merely to be able to 'face the world' " the exactly appropriate phrase in the circumstances.

The redoubtable Simon Weston, by contrast, who was badly burned during the Falklands conflict, and had to have more than 70 operations on his scarred face and body, said that he would not choose to have a face transplant although he would not stop others from having them. His reason was that he had got used to his rebuilt face, and wears his scars with honour.

As this shows, personal decision would play a large factor in face transplants, and the fact that the subjects of them chose to have them would make a difference to how well they adapted afterwards. It is hard for those who need, or would strongly like to have, a face transplant to be told by people of normal appearance what all the drawbacks might be, and for ethics committees to prevaricate because of the difficulties they expect others to suffer. That is often the way with medical advances; they are held up by caution, while those who are prepared to take the plunge have to wait.

Whether or not the brave first step in Amiens succeeds, face transplantation is here to stay, and further advances will be made in improving both its medical and psychological success. This is inevitable because it offers something crucial: namely, to make facial appearance less important in the lives of those for whom negative or pitying reactions to their disfigurement make their looks matter far too much, and in the wrong way.

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