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!