The face of things to come

July 21, 2006

Full-facial transplants may be tempting for severely disfigured people but they carry many physical risks, not to mention the psychological implications, writes Nichola Rumsey

Our faces reflect signs of our genetic inheritance, together with unique patterns of marks, scars and wrinkles amassed over the years.

What might it feel like to "wear" the face of another person - to wonder what caused the marks and wrinkles on the donor's face and to contemplate the genetic make-up inherited by that person? How easy might it be to incorporate a new face into an existing identity?

These are just some of the psychological questions thrown up by the announcement in 2003 that surgeons in the US and UK were ready to perform the first whole-face transplant. From a surgical point of view, the news was exciting. Surgical treatment for severe facial disfigurements resulting from injury (for example, burns) or disease (such as cancer) is complex, involving surgical reattachment of tissue or the grafting of skin from other parts of the patient's body.

Multiple surgeries are common, with associated risks of infections and graft failure. The aesthetic result is also often disappointing for both surgeon and patient - far from the "miracles" associated with plastic surgery on TV shows or in cosmetic surgery adverts. If a facial "mask" of skin tissue, nerves and arteries, removed from a recently deceased donor, could be substituted for the damaged one, then scarring would be minimal and the aesthetic outcome better. This procedure was hailed as a major breakthrough.

There were misunderstandings, however, surrounding the announcement. Having a face that is visibly different from the norm and that attracts attention is undoubtedly challenging. Daily experiences such as being stared at, being asked unsolicited questions, uncertainty for both parties when meeting others for the first time and distress that the reflection in the mirror no longer represents the real "me" are common.

For many, the negative impact on self-perceptions and social experiences are considerable and may, in some cases, be overwhelming. However, a common myth is that extensive facial difference is debilitating for all. This is far from true. Although some con-tinue to seek multiple surgical procedures over many years in attempts to alleviate their distress, most adjust to their "difference" and decide that the costs of further surgery outweigh any gains.

The Royal College of Surgeons of England responded to the initial announcement by establishing an expert group to consider evidence and expert opinion relating to the risks of surgical failure or rejection of the transplant, the ramifications of lifetime immunosuppression (necessary to stop rejection of the transplanted face), the psychological consequences of the procedure and the associated ethical issues. The group concluded that, in view of the risks, "it would be unwise to proceed with human facial transplantation", but the pro-transplant momentum has increased since then after the first partial face transplants in France and China.

The risks, though, remain considerable. There is a danger of technical failure in the immediate postoperative phase of any microsurgical procedure. However, the estimates of the percentage of facial transplants that would fail to a greater or lesser degree in the years following the transplant are startling. Some 10 per cent of face transplants may be subject to some degree of failure from rejection within the first year of the operation, and significant losses in function may occur in 30 to 50 per cent of patients in the first five postoperative years.

Total rejection of the transplant may be averted in a percentage of these cases through an increase in the level of immunosuppression, but it is likely that facial mobility will be permanently compromised through the process. It is estimated that about one in five grafts will fail irretrievably and will have to be surgically removed. These risks increase over time.

The psychological consequences of rejection and graft failure are also likely to be significant. Recipients will be asked to be vigilant for signs of rejection - and as the risks continue to increase, it will be difficult for patients to put the stress of the transplant behind them and move on.

In cases where rejection levels become irretrievable, the transplanted face will have to be removed. The options will then be to seek another donor face (although the risk of rejection of a subsequent transplant is thought to be greater), to undergo one or more conventional reconstructive procedures (with the associated risk of failure or infection) - the patient is likely to have undergone similar operations post-injury and presumably has been sufficiently unhappy with the aesthetic result to seek a transplant - or the face will be re-grafted using skin substitutes (employed in burn care, with a less than optimum aesthetic result). At best, the patient can be considered to be back at square one. At worst, they could be considerably worse off than they were pre-transplant.

For transplants that are not rejected, estimates of the recovery of full movement in the face (for example, those implicated in fine changes in expression) have been estimated to be about 50 to 80 per cent, with the likelihood of the recovery of sensation and feeling in the face approximately 50 per cent.

From a psychological point of view, these risks are significant. Lack of feeling may make it difficult to "own" the new face and to assimilate the graft as part of the person's identity. Deficits in facial mobility may make communication harder, although the level of function post-transplant may well represent a gain from the time prior to the operation.

The skin is particularly susceptible to rejection. The immunological regime necessary to prevent rejection of the transplanted face carries considerable risks of illness and the likelihood of a reduced life expectancy for the recipient. While these risks may be considered worthwhile in a life-lengthening procedure such as a liver transplant, the wisdom of recommending them to someone with an otherwise normal life expectancy is more questionable.

The risk of viral infections is considerably increased, as is the susceptibility to most forms of malignancy (estimates include a two to fourfold increase in the risk of many cancers and a 50 per cent increase in the risk of skin cancer). Up to 12 per cent of transplant recipients may develop diabetes, and there is an increased risk of developing high blood pressure.

Previous research has also highlighted a number of psychological consequences for recipients of transplanted organs and limbs - including fears about rejection and curiosity or guilt about the donor. However, transplantation of the face is likely to add another layer of complexity to those psychological issues, since the face is highly significant in our perceptions of our identity and in our recognition by others.

Any candidate for a transplant will need to be resilient, but is such a person likely to feel that life with a facial difference is so awful that the risks are worth taking? Candidates will need to be well informed of the risks in a clear and unbiased way and they will need the patience to wait for a donor. Research suggests that the number of families willing to donate the face of a loved one will be few. Recipients will also need the resilience to cope with the reaction of the world - and the world's media - to their changed face.

If, as a psychologist with a long-standing interest in the consequences of disfigurement, I were asked for an opinion by someone contemplating a whole face transplant, I would advise them not to go ahead as the risks are too great. But what if someone knew the risk and believed they would not adjust to their disfigurement over time? Would I still object? No, I would not.

Who am I, with my intact, comfortably worn and familiar face, to deny the misery of someone who is heavily invested in their appearance, and who feels life with a visible difference is barely worth living?

Things are moving fast. Two partial transplants have been carried out and a US surgical team has been granted permission to carry out a whole-face transplant. An application from a UK surgical team was considered in June by the ethics committee of the Royal Free Hospital, London, which looked in detail at the practicalities of such transplants, including the issue of high-quality ongoing psychological support. The expectations of people who find life very difficult with an extensive facial difference have been raised.

At this point, careful attention should be given to the minimum acceptable standards and the support recipients will need. How will candidates be selected? How will we check that informed consent has been given? How will we prepare patients for discharge from hospital and for engaging with others with their new face and dealing with the media? In the longer term, what support should be put in place to deal with ongoing fears of rejection?

The families of both donor and recipient are also likely to need support - the recipient's family to help the recipient adapt and cope, and the donor's to deal with their bereavement and with thoughts that the face of their loved one somehow still exists.

Lastly, and important, we need to talk about what the impact of whole-face transplants will be on those living moderately or very successfully with a facial difference. Will they feel less comfortable with their "different" ooks and feel under pressure to revisit their decision to stop having surgery?

I would like to believe that we are moving towards a broader definition of what is "normal" and a greater acceptance of difference in appearance. Yet clearly the opposite is nearer the truth. Whole-face transplants may be an exciting next step on the reconstructive surgical ladder, but they may also turn out to be a further assault on the acceptability of visible difference.

Nichola Rumsey is director of the Centre for Appearance Research, department of psychology, University of the West of England. . She is on the panel of experts set up by the Royal College of Surgeons. The CAR is looking for volunteers for research into psychological adjustment to disfigurement and appearance concerns in the general population. Tel: 0117 3283967.

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