Face transplantation 10 years on…

Isabelle Dinoire

Isabelle Dinoire pictured in 2009

Hats off to Isabelle Dinoire! Ten years ago today, she signed the consent form to receive the world’s first face transplant – and I wished her well three days later when she appeared in front of a massive press conference – and I wish her well again today.

She deserves the gratitude of people with severe facial disfigurements because she was willing to take what the Royal College of Surgeons’ Working Party in November of the following year called ‘a leap into the dark’.

Of course, not that many people have been willing to take such a leap but around thirty have done so worldwide. Some of the transplants have been immense undertakings involving skin, bone, muscle and much more. Sadly, some patients have died – one at least because they failed to conform to the immune-suppressant drug regime; others probably because the graft has failed.

But most patients survive – and some have told their stories in graphic detail expressing gratitude to the donors’ families and the surgical teams – see the New York Times and The New Yorker in 2012, for example, and this week’s interview on BBC Newsnight and this from a Polish man.

Ten years on, I think several things are clear:

First, that face transplantation is still in its research phase but is proving itself as a very effective method in the surgeon’s armoury for dealing with the functional and aesthetic issues posed by severe facial disfigurements from traumatic and other causes.

Second, that the very complex and highly individualistic challenges of preventing graft rejection and designing effective immune-suppressant drug regimens are being tackled – but there is little public knowledge about patients’ experiences.

Third, that the psychological and social benefits have been well-expressed by those who have gone public – but I continue to be concerned about the quantity and quality of the pre- and post-transplant psycho-social support to both the patient and their family.

Fourth, patients can take on another’s face but their sense of identity is not easily regained – as Isabelle herself expressed in 2008: “It’s not hers, it’s not mine, it’s somebody else’s… Before the operation, I expected my new face would look like me but it turned out after the operation that it was half me and half her… It takes an awful lot of time to get used to someone else’s face. It’s a peculiar type of transplant.”

Fifth, whilst some donors’ families have been willing to go public, I worry that donor family support and privacy have not been given as much attention as they merit.

And sixth, and finally, the media coverage has raised public awareness that face transplantation is a remarkable procedure that can offer improved appearance and functioning for people with severe facial disfigurements – but it is not a magic wand.

In the month after Isabelle Dinoire’s leap-taking, I wrote to the president of the Royal College of Surgeons of England to ask that he and the RCS Working Party update its 2003 report on face transplantation (which had been very hesitant). Last night I re-read the outstanding 2006 report and marvelled at its wisdom – it is the most informed public document about face transplantation and established the highest ethical benchmark for British research teams.

One of my concerns as face transplantation becomes a frequently-used procedure in the next decade is that inexperienced clinical teams will ‘have a go’ – and I think there is a risk that the learning by research teams is not being shared as widely and fully as it could be. I am going to write to Clare Marx, the current President of the Royal College and to her counterparts in the US, France and possibly other countries to suggest that they combine to commission an international review.

But let me repeat: Hats off to you, Isabelle! I shall raise a glass to you this evening!

Research is definitely a crucial part of a better future but let’s not forget the present

Two big stories breaking in the media today are attracting my attention – a nice change from yesterday’s need to challenge another tiresome TV series title.

First, overnight news comes in of another incredible face transplant operation, this time on a man in the States, Richard Lee Norris, who had been injured 15 years ago in a shooting accident. The photographs released show the brilliance of today’s surgeons but they also remind me of an Italian man I was in hospital with back in the 70s who had to endure many brilliant conventional operations to repair a similar injury.

And almost simultaneously, news of a new major research programme into the causes and impact of cleft lip and palate. To quote the press release of The Cleft Collective: “cleft is one of the most common congenital abnormalities in the world, affecting 1,200 children born in the UK every year – but little is known about its causes, with opinion divided on best treatments.

So, in case anyone is in any doubt of my position (and Changing Faces’), let me say it again: medical science has a huge part to play in making a better future for people whose faces look unusual for any reason. Gaining the funding to do this, as The Healing Foundation and the Universities concerned have done for the cleft programme, is vital – congratulations and thanks to them…

Just as important for the future too is that conventional well-proven surgical and medical interventions are available and that includes skin camouflage which Changing Faces is now offering directly or in NHS clinics.

All of these options should be available to patients wherever they live – which is sadly certainly not the case in many many parts of the world. Much more advocacy is needed…

But there is something vital missing in this recipe because even if the transplantation research is successful, it will only be for a very few patients worldwide each year. Thousands, millions, will continue to have to live with their condition – their disfigurement – their birthmark, facial paralysis, their asymmetry, for the rest of their lives. And this is difficult.

All of them should have access to what could be described as ‘disfigurement life-skills training’ – a process by which patients (and their families) are helped to adjust to looking unusual in a world that prizes good looks so much and stigmatises not-such-good looks.

What has shocked me about Richard Norris’s story is the revelation that he spent 15 years living as a recluse. This should never happen to anyone. Sadly we hear every week that it does to far too many people… with a Bell’s Palsy or after cancer surgery or after burns or….

Frustratingly, Mr Norris and many others have not had access to the sort of empowerment that Changing Faces specialises in and advocates for – and is now available in some places. In particular, we know how crucial it is to people of all ages who have unusual looks to develop effective communication skills to manage all sorts of everyday social interactions. Going shopping, using public transport, meeting strangers, being in the playground – all these and many other everyday occurrences which most people take for granted can become nightmare scenarios. Here’s a pointer to the sort of help I have in mind.

Richard Norris’s remarkable surgery will make him less conspicuous in his everyday moments – let’s hope he finds the confidence to thrive in them too in the future.

Why face transplant research is important – and, more power to Oscar!

The Times carried a moving interview yesterday with the surgeon, Dr Joan Pere Barret, who carried out the world’s first full face transplant a year ago on ‘Oscar’. Some might say it was a pity it was not with Oscar himself but I fully respect his desire for privacy as he comes to terms with his completely new face – and all the risks associated.

Oscar’s injuries were from an accidental gun shot and if you look at the internet images of the damage, you can understand why “(for 6 years) he never went out because he was worried about people laughing at him” according to his surgeon.

The face transplant has undoubtedly given him a new lease of life in functional and aesthetic terms and you can understand why he decided its benefits outweighed the risks that the transplant may be rejected or that the heavy lifelong immuno-suppressant regime might have horrible side-effects or reduce his capacity to fight off infection or cancer and so reduce his life expectancy.

As more of these important transplants are proposed and conducted, I found myself reflecting on two aspects of this man’s case:

First about the similarity between the gunshot wounds that Oscar and another transplant patient, Connie Culp have endured and those of the first patients of modern-day facial reconstructive surgery, those injured in the trenches of the First World War.

Another book in the genre exploring those days, following Marc Dugain’s The Officer’s Ward (also a fine film), Pat Barker’s Life Class and The Crimson Portrait by Jody Shields, came out this week by Louisa Young called My Dear, I Wanted To Tell You. It takes the reader to the now extinct hospital, St Mary’s Sidcup where Harold Gillies performed so many facial surgeries.

But the second point is that many of those real men and women like the Italian guy with gunshot wounds I shared a ward with back in the 70s were supported and enabled, despite their less-than-perfect surgical repairs, to face their worlds again.

It grieves me to read that Oscar spent 6 years in isolation. I passionately believe that he – and many other patients worldwide who may be waiting for transplants (or not) – should be offered immediate help to enable them to emerge from that isolation – or better, never to go into it in the first place.

And, indeed, despite his new ‘improved’ appearance, Oscar (and the others) will still need help (I suspect) to learn how to manage (the fear of) the reactions of other people to him in all sorts of social encounters, small and big.

This is one reason why psycho-social professionals should be present as core and essential members in all clinical teams dealing with patients who experience facial conditions that affect their appearance be it after trauma, cancer, warfare, stroke, birth conditions or any other cause, even what might be thought of as ‘quite minor’ (but rarely is to the person whose face is affected). It is also where the cognitive and behavioural approach pioneered by Changing Faces and now in play in many hospitals is so crucial.

I described that approach in brief at the end of my blog on 16.3.11 but, to come back to Oscar, I would want him to have now – and to have had before – a social skills mentor who could help him understand how others are likely to experience meeting him and to devise and practise how he will – pro-actively and robustly – handle such reactions in the future.

More power to you, Oscar!

The Science of Ash and Ashes

An extra-ordinary week which started for me in Guernsey, stuck in Guernsey due to the volcanic ash… I eventually got on a ferry to Weymouth (meeting a friend who had travelled all the way from Beijing over 4 days) reflecting on how nature’s forces are still so little understood despite all modern science’s insights and methods…

And then to the British Burns Association conference to see how burns surgery, therapies and psychological care has advanced over the last 40 years… I was given the chance to reflect on my ‘journey’ since my accident back in 1970 – or, rather, as I described it, the three journeys that can be traced back to that night and that fire…

Nature’s force that night burned 40% of my skin and rendered my face unrecognisable… My long road to recovery from those ashes crucially involved my superb surgery team figuring out the best way to save me and then to reconstruct my face – ‘cutting edge science/surgery’, to coin a phrase, that gave me a face which I could literally live with.

Archibald McIndoe, the famous surgeon who rebuilt the Battle of Britain fighter pilots’ faces (the Guinea Pigs) said in the late 40s: “it is not possible to construct a face of which the observer is unconscious but it should not leave in his/her mind an impression of revulsion, and the patient should not be an object of remark or pity”.

At the BBA, I attended a remarkable lecture (by surgeon Stuart Watson) on the amazing repertoire now available to the 21st Century surgeon – and I was pleased to see him present at my lecture on how the modern science of psycho-social interventions can now enable patients of all ages to rebuild their self-esteem and self-confidence. The pioneering social skills training which Changing Faces has done much to develop has now been shown to enable patients to mediate the impact of their disfigurement in today’s culture that prizes looks so much…

Today I have witnessed and been asked to comment on a spectacular scientific breakthrough – the world’s first full face transplant. Although details are still sketchy, we all hope that the young Spanish farmer who has chosen to undergo this radical experimental surgery will come through with a face that is fully functional and aesthetically pleasing – and will regain self-esteem and self-confidence with his new face. The analysis done by the research teams, the surgeons and the psychologists working with this patient will hopefully inform and enhance future treatments and surgeons’ repertoires.

The week as a whole has resounded to words once used to me by a wise Indian chaikhana owner at a low point in my personal journey, we have “far to go and much to learn”.