Interface

Face Transplant

The face race

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The face race

The Author

Fay Bound Alberti

Blog originally posted at the Net Gains site.

In our latest piece for Net Gains? Professor Fay Bound Alberti discusses how the technological face race is one example of how an interdisciplinary approach is crucial to understanding the future of technological advancements in medicine.

The face race

In 2005, Amiens – France, the first face transplant in the world took place. The recipient was a 38-year woman, Isabelle Dinoire, whose face had been mauled by her pet Labrador while she was unconscious. There had been discussion since the 1980s of the potential of a face transplant one day, though France was a surprise forerunner. It was Peter Butler’s team at the Royal Free in London that was popularly, at least in the British media, expected to be first past the post; to win the face race. That very language – of medical firsts – is important, because all technological innovation involves the desire to improve, to enhance, to create, to push current practice in the presumed spirit of ‘progress’ forward in leaps and bounds, rather than inches. For the winners there is kudos and often riches – prestigious research grants, professional reputations. Along the way, however, there are failures, and risks.

In medical contexts, technological innovation is especially fraught, for the risks that are involved involve human subjects – especially those who are in a fragile emotional or physical state, sometimes on the brink of death. Each of us wants our medical professional, especially surgeons, to be enormously skilled and experienced in the procedure that we need – to have undertaken ‘more transplants than you’ve had hot dinners’ as one cardiac specialist said to me. But someone must be first to receive a new procedure, as well as the first to undertake it. The history of medicine is littered with so-called ‘guinea pigs’ on whom technological interventions have been tested, and not always successfully. The cardiac surgeon Christiaan Barnard made it to the cover of TIME magazine for his first successful heart transplant in 1967 but his patient – Louis Washkansky – lived only 18 days.

Face transplants, like hand transplants, are undertaken to enhance rather than save lives – though ‘Quality of Life’ is a much-debated concept. It is often possible to reconstruct faces using an individual’s own tissue, or to involve advanced prosthetics, just as technological innovation is increasingly able to emulate the touch and functions of a human hand. So why choose a face transplant?

Face transplants are a functional and aesthetic choice; reconstructed faces can have a taut and patchwork appearance, with burn patients needing multiple, ongoing operations. The complex skin and nerves around the mouth cannot be reconstructed by traditional means. In medical terms, face transplants are rare and risky procedures – even more than hand transplants; there have been fewer than 50 around the world since Isabelle Dinoire’s pathbreaking operation. There are many reasons for this: a lack of donors (few people want to give away the faces of their loved ones); a limited number of multidisciplinary teams with the skills to undertake the procedure; prohibitive costs – and in countries like the US no third-party insurance coverage – and the risks of taking immunosuppressants. Ten of those people who received face transplants have died of complications relating to the procedure, of cancer (like Isabelle Dinoire, who died at just 49), or by suicide. Two people have received re-transplants when their faces failed.

The future of face transplants is uncertain, especially as the large experimental grants given by the US Department of Defense are running out. New technologies are being adapted and developed to take their place, with tissue engineering being held up as the future promise for patients. Tissue engineering is a branch of Regenerative Medicine that combines stem cells and biomaterial scaffolds to restore organs after injury or disease. Emerging technologies relevant to face and hand transplants include 3D bioprinting, bio fabrication, pluripotent stem cells that are capable of self-renewing, and developing into the three kinds of cells that make up the human body. At present, tissue engineering plays a relatively small role in patient treatment and the procedures are still experimental and costly. These new technologies also come with their own controversies – around animal experimentation, human tissue use, informed consent, scientific integrity, and societal impact. The history of medicine informs us that ethics all too often fall by the wayside once a procedure moves from the bench to the bedside.

The Arts and Humanities play a critical role in helping navigate the complex questions of risk and ethics, of quality of life and the value of human experience. In the case of face transplants, qualitative research is critical to help surgeons evaluate patient outcomes. The experience of drinking through a straw might be a clinically measurable way of determining the success of a transplanted face. How it feels to kiss a loved one with the mouth of another, or to be kissed by that mouth, is not. But it isintegral to the human experience of facial transplantation, as explored by my Interface project, which is funded by a UKRI Future Leaders Fellowship and uses interdisciplinary methodologies to understand the emotional impacts and ethics of surgical experimentation. Interface explores themes relevant to a wide range of technological interventions: from facial recognition systems to deepfakes; from identity politics to cosmetic surgery, from 3D printing to transplanted faces. Such interventions tend to reflect rather than subvert traditional ideas about race, gender, ethnicity, and ability. How we live well with technologies of the face is a pressing ethical and social question. 

The Interface project is housed in the Department of History at King’s within the Faculty of Arts and Humanities. The project is affiliated to the Centre for Technology and the Body, directed by Professor Fay Bound Alberti, as part of the Digital Futures Institute.

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Silence, surgery and strangeness: face transplant and the film Eyes without a Face/Les yeux sans visage (1960)

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Interface

Silence, surgery and strangeness: face transplant and the film Eyes without a Face/Les yeux sans visage (1960)

The Author

Sara Wasson

Interface

This is the first blog in our series on horror, Halloween, transplant and facial surgery. It explores the 1960 French-language horror film Les yeux sans visage or Eyes Without a Face, directed by Georges Franju. Based on the novel of the same name by Jean Redon, it revolves around a plastic surgeon who is determined to perform a face transplant on his daughter, who was injured in a car accident. Catch up with AboutFace PI Fay Bound Alberti’s introduction to the series, and keep an eye out for next week’s installment from Lauren Stephenson. 

Silence, surgery and strangeness: face transplant and the film Eyes without a Face/Les yeux sans visage (1960)

Silence … unbearable tension … and seven people faint, overcome by what they see on the screen. So the tale goes of the screening of Georges Franju’s film Les yeux sans visage at the Edinburgh Film Festival in 1960. Although that story might be apocryphal, there is no denying that Franju’s melancholy, ponderous film invites viewers into a compelling and claustrophobic contemplation of a face transplant gone awry. 

Yet the film does many things beyond shocking an audience. Like all ‘horror’, whether film, book or game, Les yeux does cultural work. It can show us prevailing anxieties, but it can also be ‘speculative.’ As critic Kelly Hurley says of earlier Gothic work: it can help us consider things which might be hard to contemplate in other cultural arenas. Les yeux is a haunting example of a film which invites us to contemplate unbearable and unspeakable things: guilt, family dysfunction, despair, as well as thinking about the mysterious practices of surgery and face transplant.

Surgery

First: surgery. After chloroform and other general anaesthetics entered use in the 19th century, surgery underwent a dramatic shift in the way it has been thought of and represented. Prior to the emergence of sweet analgesic oblivion, surgery was an act of violence and pain; in the moment of surgery, the experience could evoke butchery or vivisection. General anaesthesia mercifully removed much of the pain, and also crucially changed the surgical context, both in practice and in popular imagination. 

Surgeons became a kind of secular priest, leading within a  quiet and fundamentally unknowable space, a place which lay people could not enter. The person at the centre of the event —the patient—is mercifully unconscious of what occurs there. The poet Karen Fiser speaks of the ‘white space’ of anaesthetised surgery, for if it works as planned, the lapse of time is blessedly blank. The patient hopes to be spared their own body’s suffering under a blade.

The famous surgical scene of Les yeux takes us into that ‘white space’ of surgery, while relentlessly withholding any distractions or solace. Without music, the camera focuses on the shining tables and instruments, the movements of the scalpel, and profound stillness and attention. The shock of the scene stems not from gore, but from the extended, silent, meticulous attention and precision of the surgical act. Scalpels, silence, and stamina.

Emotionally Charged

In addition to its fascinating representation of surgery, the film offers many other provocations for reflection. Any form of tissue transplantation may become emotionally charged for the receiver, the family of the donor, or the donor themselves, and face transplant is consistently a form of tissue transfer which garners particularly intense emotion. Indeed, long before transplantation became medically viable with the pharmaceutical launch of cyclosporine in the 1980s, face transplant inspired a vast range of creative work and discussion. Nowhere was this more true than in France. Gaston Leroux’s novel 1909-1910 Le Fantôme de l’Opéra (The Phantom of the Opera), serialised in 1910, and Victor Hugo’s 1869 novel L’Homme qui rit (The Laughing Man) published in 1869, are just two of many French works which contemplate the emotional challenges of facial injury.

The critic Stefanos Geroulanos has discussed how, during the twentieth century, the horrors of World War I trench warfare intensified awareness of the subjective burdens of facial wounding due to the deep suffering of the gueles cassees, soldiers facially mutilated during the nightmare of trench warfare. The face was explored in philosophical writing, too, with philosophers like Maurice Merleau-Ponty, Roland Barthes and Emmanuel Levinas reflecting on the cultural significance of faces and the way they mediate social connection. Given this wealth of interest in the trope of facial surgery and transplant, it is perhaps fitting that France was the first country to achieve a successful face transplant in 2005.

Tissue Rejection

es yeux draws attention to another historical reality, too: tissue rejection. Until pharmaceutical immunosuppression was developed at the end of the twentieth century, any transplant led to acute rejection (except between identical twins). Unless immune-suppressed, the body recognises transplant tissue as genetically ‘other’ and attacks it, killing the tissue, and the recipient then succumbed to both the loss of the transferred organ and the poison of the decaying transferred tissue 

Some of the most haunting images of the film are from the sequence of still photographs in which Christine, the transplant recipient, stares miserably at the camera while it records the failure of the graft. Since the time the film emerged, immunosuppression has transformed the arena of transplantation, and tissue recipients are no longer so inevitably afflicted. 

Rejection remains, however, an inevitability in face transplant, although many periods of rejection can be treated. Yet through these emotive, silent images, the film gives the viewer a vivid sense of the suspense, dread and disillusionment that accompanied the decades of experimental failures. Scientific writing has to be detached, but nonetheless the 1960s and 1970s saw emotional language used by scientists and surgeons, describing ‘dark days’, ‘black years’, and ‘clinical heartbreaks’, as acknowledged in analysis by Reneé Fox, Judith Swazey and J. Dosselor. Cinematic moments such as this—albeit in a fantastical film—can help us feel the emotion inside surgical history. 

Inspiring work like the AboutFace project, led by Professor Prof Fay Bound Alberti, explores the many facets of tissue transplantation. In addition to surgical scenes, there are so many human elements to transplantation practice, including the experiences of donors, donor kin, recipients, caregivers, surgeons, anaesthetists, nurses, physiotherapists, and more. In addition, one can consider the administrative apparatus of tissue allocation and management nationally: the algorithms of waiting lists, the icebox, the management of donor death, and more.

Horror and Transplantation

I haven’t described the film’s plot, and that’s not accidental. Any summary of the film’s plot makes it sound like it must appear on screen as a frantic bloodbath, scarlet splashed on celluloid. So many murders. So much death. But reducing the film to the plot would miss the most powerful thing about it: the soporific, restrained delivery, remarkable silences, and the lost, drifting quality of the protagonist, Christine. Iain Sinclair has critiqued the film’s ‘funereal’ pacing—‘all that plodding up staircases’, but as I suggest elsewhere, the plodding is perhaps the point: the film has a dream-like melancholy, confronting the viewer with Christine’s sadness guilt, and exhaustion. 

Films such as Les yeux do not offer realistic representations of contemporary transplantation, but they do give us an opportunity to dwell with, and think through, surgical histories of transfer and our own cultural imagining around it. Transplantation is an extraordinary feat. Yet, like any human practice, it may also at times involve elements of grief, pain, inequalities of access, and other difficult histories both personal and social. Even today, there can be challenging emotions around transplantation for recipients, donors, donor kin and caregivers, and these emotions deserve compassion. The Process of Incorporating a Transplanted Heart (PITH) project in Toronto, Canada, explores some of the emotional and conceptual challenges that can attend tissue transfer. Works such as Sheryl Hamdy’s Our Bodies Belong to God, Megan Crowley-Matoka’s Domesticating Organ Transplant and Lesley Sharp’s Strange Harvest all invite us to recognise some of the complex mixture of emotions around these processes. 

In the service of such nuance, horror film and fiction can be a surprising, but useful, ally to imagination. Horror may help us listen to histories that are hard to hear.

References

Crowley-Matoka, Megan, Domesticating Organ Transplant (Durham: Duke University Press, 2016)

Dosselor, J., ‘Transplantation’, in P. Terasaki (ed.), History of Transplantation (Los Angeles: UCLA, 1971), pp. 295-306 

Fiser, Karen, Losing and Finding (Denton: University of North Texas Press, 2003)

Fox, Renée and Judith Swazey, Spare Parts (Oxford: Oxford University Press, 1992)

Fox, Renée and Judith Swazey, The Courage to Fail (Chicago: University of Chicago Press, 1978)

Geroulanos, Stefanos, ‘Postwar facial reconstruction’, French Politics, Culture & Society, 31:2 (2013), 15-33 

Hamdy, Sherine, Our Bodies Belong to God (Berkeley: University of California Press, 2012)

Hurley, Kelly, The Gothic Body (Cambridge: Cambridge University Press, 1996)

Les yeux sans visage, dir. by Georges Franju (Champs-Élysées Productions, 1958; US release 1960).

Sharp, Lesley, Strange Harvest (Berkeley: University of California Press, 2006)

Shildrick, M., A. Carnie, A. Wright, P. McKeever, E. Huan-Ching Jan, E. De Luca, I. Bachmann, S. Abbey, D. Dal Bo, J. Poole, T. El-Sheikh and H. Ross, ‘Messy entanglements’, Medical Humanities, Online First (2017), 1-9 

Sinclair, Iain, ‘Homeopathic horror’, Sight and Sound, 5:4 (1995), 24-27

Wasson, Sara, Transplantation Gothic: Tissue Transfer in Literature, Film and Medicine (Manchester: Manchester University Press, 2020)

 

Author bio:

Sara Wasson is Reader in Gothic Studies at Lancaster University. She is the author of Transplantation Gothic: Tissue Transfer in Literature, Film and Medicine (2020) and Urban Gothic of the Second World War (2010), which won the Allan Lloyd Smith Memorial Prize of the International Gothic Association. With Emily Alder, she co-edited Gothic Science Fiction, 1980-2010 (2011), editor of a special issue of Gothic Studies exploring Medical Gothic (2015), and primary investigator of the UK AHRC-funded project Translating Chronic Pain. Her articles have appeared in The Journal of Popular Culture, Medical Humanities, Gothic Studies, and other publications.

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Transplantation narratives on screen: a Halloween blog series

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Interface face

Transplantation narratives on screen: a Halloween blog series

The Author

Fay Bound Alberti

An introduction to our October blog series, exploring the ties between transplantation and the horror film genre. Don’t miss blogs on Les Yeux sans Visage, The Eye, and Hollywood’s negative representations of facial difference.

Transplantation narratives on screen: a Halloween blog series

At InterFace we work according to a strict code of ethics around respect for human life and dignity. We care about the language that we use to talk about facial difference and appearance, and about the emotional, ethical and socio-economic challenges of transplantation. That work and care, takes place within a wider cultural context in which the major themes of our research – facial difference and transplantation – are not always treated with sensitivity or regard for human experience. Indeed, as the founder of Face Equality International and our own Sarah Hall has shown, facial difference is associated with negative personality traits in popular culture; Hollywood “baddies” carry facial scars that mark them out as separate from (and antithetical to) civilised society.

Transplantation is also a subject that has, since its inception, generated considerable public interest and anxiety. Transplanted organs, as historians of literature, film and ethics, have shown, are invested with a wide range of meanings, whether it’s the Hands of Orlac (1924) which an experimental graft gives a concert pianist the hands of a murderer – who continues to murder. Or Face/Off (1997) in which FBI agent Sean Archer (John Travolta) and master criminal Castor Troy (Nicholas Cage) change faces, and with it their entire social and familial identity. Stories of body swapping, organ harvesting and enforced donation have been part of the literary landscape since the 1960s, and these influence, and contribute to, broader social and political concerns about bodies, citizenship, and personhood.

Throughout October, and as an antidote to the casual exploitation of horror narratives around appearance and the limits of the body, we will be reflecting on transplantation narratives in fiction, with a series of fascinating guest blogs: Sara Wasson will be writing about Eyes without a Face (1960), a film that invites audiences to contemplate ‘unbearable and unspeakable’ around transplant ethics; Lauren Stephenson will be writing about The Eye (2002), a film that, like Hands of Orlac, continues the fear of the ‘haunted organ’; and Paddy Adamson will be exploring the Hollywood’s exploitation of spectacles of facial difference. Thank you to all our contributors.

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The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

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The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

The Author

Fay Bound Alberti

In December 2021, the AboutFace team convened a three-day Policy Lab with the support of the Policy Institute at King’s College London. The Policy Institute has a track record of bridging the gap between research, policy and practice, and making recommendations to UK policy makers. But the AboutFace policy lab was not looking to shape UK government policy around face transplants. Rather, its rationale was quite different.

The making of a blueprint. How historical, qualitative research should inform face transplant policy and practice.

One of the purposes of AboutFace research is to bring interdisciplinary, international expertise to bear on some of the pressing challenges around face transplants. I developed this programme of research into the history and ethics of face transplants because I wanted to ensure that all stakeholders were brought into the discussion: people with lived experience of visible difference, qualitative researchers, and extended surgical teams. The reasons why are quite simple.

Since 2005, when the first face (partial) face transplant took place, the emphasis has shifted in ethical debate from whether it could or should happen to how it happens. Yet many of the issues raised in 2003 and 2006 by the Royal College of Surgeons are still problematic. Heavy use of immunosuppressants carry a health burden for the whole patient and are life-reducing. The estimated length that a face transplant will survive is ten years, though there are some exceptions. There is no consensus on how patients should be selected, and no real data sharing across boundaries. There is not even any agreement on what success looks like in face transplants, a subject I am talking about at the International Society for Vascularized Composite Allograft conference in Cancun this week.

Creating a Gold Standard

In bringing experts from all around the world together, we wanted to create a blueprint that makes recommendations for best practice; a gold standard in how far transplant policy and practice should be led. We were heartened by the consensus in the room, and by the simplicity – but importance – of the recommendations being made to surgical teams to ensure patients receive the best possible treatment.

We believe that this Blueprint is also an example of how qualitative, historically-informed research can help shape and inform surgical practice, and make an international impact. We have included sections on patient selections and expectations, clinical frameworks, patient support networks, public image and perception, financial sustainability and data on patient outcomes and progress.

While this report has a surgical focus, because we are reaching out to extended surgical teams and nurses around the world, we will also be working to engage patients and their families with our findings. We will be releasing a series of videos and discussion points over the coming months. In the meantime, we invite you to read the report and let us know what you think. Any questions, ideas or concerns, get in touch with us.

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Diminishing their Voices: Face Transplants, Patients, and Social Media

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Diminishing their Voices: Face Transplants, Patients, and Social Media

The Author

Patrick Adamson

Public Engagement and Events Officer, Sarah Hall, writes about facetransplant patients and social media. In this blog, Sarah explores the familiar narratives that circulate in the media, and argues that the primary voice should be restored to the patients themselves, giving them control over their own narratives.

Diminishing their Voices: Face Transplants, Patients, and Social Media

A video showing a woman inside a spider monkey enclosure at El Paso Zoo, Texas, started circulating on social media in late May 2021. The woman allegedly broke into the enclosure to get a video of her feeding the monkeys Flamin’ Hot Cheetos. She did so for her social media channels. The video predictably gained a lot of attention, much of it negative. Commenters decried the woman’s reckless disregard for her own and the animals’ safety. These reactions are familiar to those of us on social media. Whether because of the relative anonymity that it affords, or because we are so strongly encouraged to share our opinions on any given issue, we are used to witnessing, feeling, any maybe even contributing to waves of collective outrage. But such moments are fleeting, and the outraged crowd will flock to a new issue before long. 

Social media is core to my work on AboutFace. The Institute of Historical Research’s History Labs+ recently invited me to speak about my work in this area. Namely, on how we present sensitive histories on our social media channels. Over the past six months I’ve come to realise that social media is capable of being far more than a tool for disseminating research. Additionally, it can be a space in which to conduct research. A valuable place to connect with trends, conversations, and public feeling. 

Drawing Parallels

It was while looking for recent tweets mentioning face transplants that I came across the video of the woman in the spider monkey enclosure, and the vitriol that followed it. I noticed that a number of angry responses mentioned Charla Nash. Nash (pictured) received a face transplant in 2016, after being brutally attacked by her friend’s pet chimp in 2009. Tweeters drew parallels between the real life attack and the potential for a repeat occurrence. However, few actually named Nash. Comments instead mentioned ‘the woman overseas who needed a face transplant’. One referenced what happened to Nash indirectly, writing ‘I see a face transplant in her future’.

Unusually, a number of replies came from British authors, who may have recently been reminded of, or learned about the event for the first time in a recently published Daily Star article. The article presented a graphic description of the attack, including audio of the 911 call made by Nash’s friend.

The news of Nash’s attack circulated widely in the US when it happened. And follow up coverage shared news of her face transplant. But coverage in the UK was limited to a few sensationalist pieces in the tabloids, while the broadsheets focused on surgical innovation. There is likely a link between the publication of the Daily Star article and the references to Nash’s attack in tweets from British authors. Tweets largely focused on the event, on the chimp, not on Nash herself, echoing the tone of the article. 

Familiar Narratives

Face transplants receive diverse treatment in social media. From flippant remarks to government conspiracies, fascination to condemnation and mockery of the aesthetic outcomes. Stories such as Nash’s circulate in public discourse according to familiar scripts. They are presented like films, featuring protagonists and antagonists, and readers treat them accordingly. Both social and news media present a fragmented view of reality, distancing audiences from the actual trauma of events. This process is exacerbated by the fact that most face transplant recipients are rarely the protagonists in their own stories. For Nash, people remember the chimp, Travis, before they remember her. They remember the attacker, not the attacked. If you Google ‘Charla Nash,’ the first result is the Wikipedia page for Travis, which remembers him both as perpetrator of the attack and tragic ‘child star.’ 

Contributing to this is the plurality of online discourse. Nash’s story, no longer simply her own, has been hi-jacked by multiple different parties. Just as some news outlets have used it to hail the victories of the surgeon leading her treatment, others have used it to mourn the tale of a wild animal raised in captivity. On social media, it circulates as a warning, a lesson against reckless contact with animals. Not long ago, it was employed to mock the people who had responded to a YouGov survey, claiming that they would beat a Chimpanzee in a fist fight. 17% of respondents answered that they would win. In these public spaces, Nash’s story is not her own, despite her efforts to present her own narrative. 

A fixed moment?

When the media, hospitals, and surgeons share news of completed face transplants, naming the patients, they catapult them onto the world stage, and directly into the public eye. Instantly, these patients’ stories are available to be picked up, claimed, shared, and transformed by others. Patients become supporting characters in other stories. I even find myself asking: were they were ever presented as something more? At AboutFace, we are concerned about this process. 

Face transplant patients are patients for the rest of their lives. There is no final ‘healed’ state, where they will no longer need medical care to monitor the donated tissue for signs of rejection. They may even have to undergo further surgeries to improve the function of their new face. But these are not the stories that are presented to the public. The people who continue to make passing, flippant remarks about face transplant, are presumably not aware of the ongoing challenges that transplant patients face. But there is no good reason that they should not be made aware. 

There is a sense, almost, that the moment the patient was presented to the media, their story became fixed in time. And it is that moment, that memory, that holds pride of place in the public consciousness. That is the moment that circulates periodically on social media, sitting below the surface until familiar details emerge in current events or conversations. Even then, it is sensationalised. These patients, who did not choose the spotlight, have been given it nonetheless.

Public Perception

It’s notable that the people referring to Nash’s story online rarely know more than the most basic details of her story, and even these details are not always accurate. As these narratives are picked up and reframed to suit the story being discussed, they take on new life. But what happened to the patient’s story in the process? 

With the distance afforded by the internet, social media users are removed from the reality of the people whose stories they co-opt. Face transplants can, in this space, continue to exist as both medical miracle and science fiction, and everything in between. The patient almost becomes irrelevant in the effort to prove a point, make a joke, or impress with a display of knowledge. But these narratives are still important to AboutFace, because they provide insight into public perceptions of face transplant. As an experimental procedure, where fewer than 50 have been performed worldwide, face transplants are still not common knowledge. We seek to understand what people know, what they want to know, and how we might contribute to more productive narratives. 

In this process, social media becomes an important research tool. We can quickly tap into the swift moving debates, opinions, and currents of public opinion. In few other spaces are people so willing to share their innermost thoughts. The anonymity afforded them provides a safety net. The nature of social media means that thoughts are shared instantaneously, without the pressure of, say, an online survey where people may seek to impress or please a reader, rather than honestly sharing their thoughts. Social media remains a performance, but it is a performance to which we have a front row seat.

Providing a Voice

When face transplant patients are not the protagonists in their own stories, something is wrong. They do not have control over the way that their narratives are told. It is time for that to change. At AboutFace, we believe that restoring the patient to the centre of the narrative is essential if we are to fully understand face transplantation and its outcomes. We speak to patients, as well as the medical teams who work with them. In doing so, we seek to place greater attention on patient reported outcomes. This means identifying ways in which medical teams can more effectively record what it means to live with a transplanted face, and what success looks like. In doing so, we will give a voice to the people who are actually at the centre of the story.

Author Bio

Sarah is Public Engagement and Events Officer on the AboutFace project. She is an experienced events manager with significant experience in the Higher Education sector, and is interested in engaging with creative methods for disseminating academic research to different audiences. She manages the social media profiles for the AboutFace project, and offers training in social media use for ECRs. Sarah is a passionate believer in the benefits of interdisciplinary research and collaboration. She is also interested in academic outreach, and is committed to making research widely accessible to non-specialist audiences. Using a combination of qualitative and quantitative methodologies, Sarah’s research is interdisciplinary and engages closely with digital humanities.

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Robert Chelsea and the First African American Face Transplant: Two Years On

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Robert Chelsea and the First African American Face Transplant: Two Years On

The Author

Fay Bound Alberti

On 27 July 2019, Robert Chelsea became the first African American to undergo a face transplant. The facial injuries that led to a transplant occurred six years earlier, when a drunk driver struck Robert’s car, causing an explosion and third-degree burns over 60 per cent of his face and body. Robert received multiple reconstructions over several years. Once they had done all they could, his surgeons suggested Robert spoke to Bohdan Pomahac and his team at Brigham and Women’s Hospital in Boston. 

Robert Chelsea and the First African American Face Transplant: Two Years On

Bohdan Pomahac and his team had performed the second partial face transplant in the USA on James Maki in 2009, and the first full face transplant in the USA on Dallas Wiens in 2011. By the time Robert was referred to the team, there had been fewer than 50 face transplants around the world, and none, as yet, on an African American patient. In his late 60s, he was also the oldest patient to date that had been considered for facial transplantation. Pomahac, meanwhile, had established himself as one of the world’s leading experts in the field. Would he and his team be able to provide the improvements in form and function that were sought by Robert: to enable him to eat and drink normally? To walk down the street without people staring, and insects falling into his mouth? To kiss the cheek of his daughter Ebony? 

The First African American Face Transplant Patient

The decision to undergo the procedure was relatively swift for Robert, though the wait for a donor took time. A devoutly religious man, Robert believed that God had paved the way for the face transplant, putting Pomahac and his team in his path. For Robert’s family and friends, the decision was less cut and dried. Ebony worried that her father had already undergone more surgery than anyone could be expected to endure – how could he voluntarily undergo more? Her mother talked her round. Her father was doing it for reasons of ‘health’; he needed to be as well as he could be, even if that meant undergoing such a radical and risky procedure. 

Robert’s transplant has been the subject of many media stories, focusing not only on the fact of his being the first African American to receive a face transplant, but also on his being the oldest such patient to date. There has been coverage, too, of the racial nuances involved; the fact that of course Robert needed a face that reflected the right skin tone for him. The hospital did not, until Robert’s operation, cover a wide range of skin tones when it came to matching donors and recipients; it took Robert’s procedure for them to rethink the implicit racism of the default White face transplant recipient. For his part, Robert has openly engaged with questions of racial inequalities in the system: the fact that for historical and social reasons there are fewer Black donors of all kinds than White. This gives Robert’s journey an additional sense of purpose: perhaps his media profile can pave the way for more public conversations about organ and tissue donation. 

Robert Chelsea. Image courtesy of Brigham and Women’s Hospital

The Hidden Costs

When I spoke to Robert and his daughter Ebony, and to Robert’s godson Ricky, as well as some of Robert’s friends in advance of the second anniversary of his transplant on 27 July 2021, I was struck by the thoughtful reflectiveness of everyone concerned, and by the love and support that surrounded him. I was also reminded that Robert’s journey towards health is an ongoing one. One of the core concerns of the AboutFace project is the largely neglected cost for patients: social, psychological, financial, and physical. Because while most media reports focus on such innovative procedures as surgical milestones, and the visual transformations that can take place, there has been far less attention given to the lived experience of patients and their loved ones. 

A face transplant is a highly visual shift from one form of appearance to another. Less visible, but equally important, are the behind-the-scenes challenges that patients must go through every day. At a physical level, there is a punishing regime of medications that include the immunosuppressants that prevent the rejection of donor tissue, and also come with a wide range of side effects besides the body’s weakened immunity to disease. In the first instance these include loss of appetite, nausea, vomiting, and trembling. Immunosuppressants can also cause other conditions, including diabetes and kidney disease. 

Alongside these physical challenges are the social costs, as a patient is generally unable to work, as even when feeling relatively well. Being a long-term patient is time-consuming, and individuals rely on a steady stream of caregivers, paid and unpaid. Financially, the costs of those caregivers, of the medications, of travel to and from the hospital and day to day living expenses can rise far beyond that which is covered by medical insurance. Indeed, insurers do not tend to accept face transplant patients because it remains experimental medicine; the majority of such operations in the US have been paid for by the military. 

Quality of Life for Patients

It is critical that we, as a society, and within medicine, start to acknowledge these hidden costs, that are not as transformative, dramatic, or immediately visible as the surgical procedure, but equally important to determining how far face transplants can be counted as successful. Quality of life for face transplant recipients must include not only some of the functional and psychosocial aspects of the procedure, in this case Robert’s ability to eat and drink normally, to kiss his daughter, and to avoid the stares of others, but also the implications for long-term health and care. Most face transplant recipients in the US (and potential recipients) need to fundraise to provide for this care, though its requirement can be seen as a side effect of the procedure itself. Quality of life must also consider the psychosocial implications of becoming a lifelong patient, with all the challenges to identity and meanings that this brings. 

The work that we are doing at AboutFace, in collaborating with surgical teams, patients and their families, ethicists, sociologists, psychologists and people with lived experience of visible facial difference, shows how critical stories like Robert’s are to the historical framing of face transplants. Medicine does not, and has never, taken place within a vacuum. Like all other aspects of society, it is influenced by beliefs about race, ethnicity and gender (whether in the question of skin tone or  presumptions about acceptable female appearance), and it is intensely emotional. Not only for patients, whose journeys towards health can be arduous and circuitous, in terms of outcomes as well as the emotional stamina needed to keep going, but also for surgical teams, who balance ‘risk’ and ‘need’ alongside their own personal and professional desires to progress the field. 

Measuring Success

Historically, the experience of patients has not been core to evaluating the success of a surgical procedure. Christiaan Barnard’s first successful heart transplant in 1967 was not so successful for the patient Louis Washkansky, who died after just 18 days. Of course, surgeons care about their patients, but the long-term effects on the lives of patients and their families tend not to be prioritised when evaluating the clinical outcomes of procedures that are innovative and path-breaking. 

In part this hierarchy reflects the fact that ‘quality of life’ measurements (like many categories associated with ‘mental health’) are inherently subjective, but it also reflects the ways medicine advances by implicitly prioritising the future needs of the many over the present few. Indeed, it is only within the last couple of years that surgical teams have begun collecting patient reported outcomes, and comparison between countries and institutions remains rare. We urgently need a more open and balanced discussion of human experience, and historical, comparative analyses of patient-reported outcomes alongside clinical findings, to evaluate the evolving role of face transplants. Listening to people like Robert Chelsea is a good place to start.

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