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When face transplants fail: Carmen Tarleton and the world’s second retransplant

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When face transplants fail: Carmen Tarleton and the world’s second retransplant

The Author

Fay Bound Alberti

What happens when face transplants fail? Project lead Fay Bound Alberti discusses Carmen Tarleton’s retransplant in this blog on donation, innovation, and patient voices.

When face transplants fail: Carmen Tarleton and the world’s second retransplant

In 2007, Carmen Tarleton was attacked in bed by her ex-husband, who broke into the home where she lived with her daughters. He hit her with a baseball bat, then covered her face and body in industrial lye. Carmen’s injuries were so terrible that her doctors at Brigham and Women’s Hospital put her into a medically induced coma for three months. 

Carmen underwent at least 55 separate surgeries before she was given a face transplant in 2013. She had also undergone multiple blood transfusions, and this exposure to other people’s blood made the rejection of her face transplant more likely. As a nurse for 20 years, Carmen was aware of the challenges of rejection, as she explained in an interview with the BBC. Her face transplant was widely reported, and she was interviewed for the BBC in 2015. 

Identities

Asked what created her identity, Carmen replied that she had been a ‘disfigured person’ and a ‘person who had a new face’, and that the process had been strange and unsettling, though the ‘core’ of her identity unchanged. When she started dreaming again, which she did some months after the procedure, she began to dream about herself with her new face, suggesting some deep psychological acceptance. 

In surgical terms, Carmen also made an exceptional recovery. CNN reported how she had ‘fulfilled her wish to kiss her boyfriend. She wrote a book, headlined an organ donor float in the Rose Parade, lectured about resilience, learned to play the banjo and became a hands-on grandmother’. Carmen Tarleton, speaking at the Congress of Future Medical Leaders in 2018 shared her secrets of resilience in an extraordinary and moving presentation.

https://youtu.be/8e41-ado7dE

No simple ‘before’ or ‘after’

There  was no simple ‘before’ or ‘after’, however, between the ‘old’ and ‘new’ lives and faces, and this is a running theme of the work of the AboutFace project. As a society we tend to focus on transformations (of houses, landscape, weight, faces), but the reality is far more complex. Any long-term patient will experience multiple, often conflicting, emotional responses. Surgically and emotionally there will be successes and failures, good days and bad days. Like any transplant patient, moreover, Carmen lives with the day-to-day possibility of rejection; that her body would start to reject the organ she had received.  

And rejection is something that all face transplant recipients will experience, albeit to different degrees. Unfortunately, for Carmen, this process became impossible to reverse. By 2019, parts of Carmen’s face began to die as its blood flow was restricted; she began to lose some of her transplanted hair and eyebrows, and part of her left nostril. Her surgeon Bohdan Pomahac and others at Brigham and Women’s Hospital in Boston believed that the only option was another transplant, an even more challenging prospect than usual given the Covid-19 pandemic. 

Second face transplant

Carmen’s second face transplant made international headlines, just like the first. Some of those reported, incorrectly, that this was another surgical first: that there had never before been a retransplant. NBC News’ Today programme ran with the headline: ‘Domestic abuse survivor becomes 1st person ever to receive 2nd transplant.’ 

This is not the case, though Carmen’s second transplant was a first for the USA. In 2010 the French surgeon Laurent Lantieri performed the first face transplant on Jerome Hamon in 2010 in Paris; the second in 2015, after Hamon was given drugs that interfered with his anti-rejection medication. 

Carmen’s second face transplant took place over two days, which is unusual; she needed to be stabilised in the ICU halfway through the surgery due to excessive bleeding, and so the face transplant was resumed the following day. Given the excessively long surgeries involved in face transplants, ranging from 20 to 30 hours, the fact that in this case the procedure was able to take place over two days put less pressure on the surgical team. This might even be a model for future face transplants, according to Dr Pomahac. 

Carmen has met the family of her second face transplant recipient, just as she met the first. Her surgeon has told her that the transplant might only last for seven years, like the first, but Carmen is unconcerned about the future ‘I believe this face is going to last me until I leave the Earth’, she said in an interview to People magazine. ‘It is my last face. I won’t have a third’. 

Progress

The success of Carmen’s second face transplant shows how far the procedure has come, in terms of managing immunosuppressants, surgical skills and expertise, and the preparedness of the public to conceive of face transplants as an acceptable form of transplantation. Carmen’s donor family was unsure, the second time round, whether donating their loved one’s face was something they could do. 36-year-old Casey Harrington had died of a drugs overdose, leaving behind a 15-year-old daughter. And the family was understandably grief-stricken. 

Although Casey’s organs saved five more people, it was the idea of donating a face that was difficult for them emotionally. At least in the beginning. Researching the procedure, learning about its life-changing nature for other people, is what swayed their decision. The family and Carmen have since met online, and, after the lockdowns caused by Covid-19, they intend to meet in the flesh. 

Public conversations

Raising the profile of face transplants in the media encourages people to donate the faces of their loved ones. But it also opens up a space for a public conversation about the challenges involved – physical, emotional and social – of the circumstances by which people end up as face transplant recipients or donors, and the multiple impacts of the surgery. The voices of patients like Carmen need to be heard if we want to understand the emotional and physical impacts of face transplants as a form of surgical innovation. This is why it is critical to move away from headlines that stress the competitive and revolutionary nature of face transplants (the drive to be ’the first’ having long dominated the history of medical innovation) towards a more patient- and person-centred understanding of face transplant.

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Portrait of an Angry Man – or not?

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Portrait of an Angry Man – or not?

The Author

Juliet Roberts

Part of our Emotions and Ethics series, ‘Portrait of an Angry Man’ is written by Juliet Roberts.

Portrait of an Angry Man – or not?

The focus of my presentation for the Webinar on 17 June 2020 was a portrait created in 1918 by the French illustrator, Raphaël Freida. The sitter is Albert V., a French soldier who was severely disfigured in action in Belgium 1915. He was a patient under the care of the orthodontist Albéric Pont, who had established a specialist maxillofacial unit at Lyon in 1914. The middle section of his face was shattered, and along with several fractures of his upper and lower maxillae his nose was torn away. He lost several teeth.

I found this particular image unsettling, since his gaze seems to fix on the viewer, and for some reason I interpret his emotional state as angry. Few of Freida’s portraits have corresponding images in alternative media. However, I was intrigued to find four photographs of Albert V. in Albéric Pont’s albums at the BIU Santé in Paris. This I hoped might resolve my idea that it was an ‘angry man’ in the portrait by Freida, or at least give broader scope to analyse the man and his injuries. With this in mind, I wanted to explore themes of objectivity and tensions between photographic or ‘scientific’ reproduction as opposed to artistic interpretations of clinical images. (Daston & Galison, 1992)

My other concern was that as historians, speculating on the emotional state of an individual may be an overly subjective approach to analysing an image as a primary source.  The following questions came to mind: Is it really possible to decipher the sitter’s emotional state from the images or, in the case of this portrait, are we simply staring at the artist’s own anger? Are the photographs of Albert V. examples of how a ‘mechanical image’ produces a more dispassionate picture of disfigurement and its resolution? Are the words ‘analysis’ and ‘interpretation’ in some way interchangeable? Does their own emotional reaction to and ‘reading into’ an image produce ethical problems for the historian?

Albert V

Using just five colours, Freida’s full-face portrait shapes Albert V.’s features and scarring using multiple, precise strokes, a technique which belies his pre-war profession as an illustrator. The sitter’s eyes and forehead have been spared injury, but the lower section of his face is a gnarled mess of disfigurement. A band of tissue covers the space where his nose was, and there is extensive scarring around his mouth. The viewer is left in no doubt as to how Albert V. received his injuries; he is wearing his military uniform.

Undated, the ‘before’ and ‘after’ photographs show Albert V. with and without a nasal prosthesis. They were part of an album of maxillofacial cases used by Albéric Pont, an orthodontist and prosthetist who established a facial surgery unit at Lyon in 1914. There is more extensive damage visible here, with a large, gaping hole where his nose should be. The corners of his mouth are turned upwards into what appears to be a smile, particularly with the nasal prosthesis in place, and there is a perceptible glint in his eyes (presumably due to light exposure). Somehow, the man in the photograph does not seem to be as troubled as he is in the portrait.

Approaching primary sources

Since subjectivity is such a personal concept, I wondered if any scientific methods had been deployed to measure emotional reactions to art. One study by Leder et al (2014) revealed that ‘challenging’ or controversial art produced more negative reactions from ‘lay’ viewers than ‘art experts’. However, I found this research unsatisfactory as it was based on anticipation of art being a pleasurable experience, or expectation of some kind of mood enhancement; obviously for those who research medical visual culture this is not always possible.

As historians, our approach to primary sources requires us to consider an object beyond its superficial impact. We have to consider how images are manipulated and audiences are targeted. The words ‘interpretation’ and ‘analysis’ produce similar explanations in the Chambers Dictionary (2008); to elucidate, unfold or resolve to arrive at the root cause of something. Consequently, exploring the context in which these images were created allows us to better understand our reactions to them. Certainly, the aim was more than simply recording the injuries for pedagogical purposes.

Portrait and viewer

Freida saw action during the Great War, and was subsequently deployed as an orderly at the military hospital in Lyon. He created a series of portraits of Albéric Pont’s patients and intended to publish a portfolio of these images entitled Les Misères de la Guerre after the war. In view of Freida’s war experience, it is essential to consider the possibility that he absolutely meant to provoke an emotional reaction from the viewer, hence his desire to publicise his portraits of these broken men. As for the photographs, it is clear that behind the recording of Albert V.’s injury and its attempted resolution lay Pont’s desire to promote his work, even if to a limited audience. Accordingly, the photographs were carefully chosen for the album (Mazaleigue-Labaste, 2015).

With regard to the ethical challenges posed by the provocation of emotions, it is reasonable to suggest that it is perfectly acceptable for the viewer, historian or not, to react to and interpret an image in terms of their personal feelings. Whether positive, negative, indifferent, these remain sentient reactions to an image. This portrait is an example of how an image forces the viewer to confront their own emotions, if not that of the sitter and the artist as well.  However, the methodological tools we have as historians allow us step back and take into consideration the broader context of these materials and hopefully reach a satisfactory, balanced conclusion to our inquiry.

Author Bio

Juliet Roberts is a second-year PhD candidate based at the Centre for Contemporary and Digital History at the University of Luxembourg. Her interest lies in artistic representation of facially-wounded soldiers from World War I. Following on from her Master’s research on the theme, her PhD project is entitled Altered Images: A Comparative Study of Medical Portraits by Henry Tonks and Raphaël Freida in the Great War.

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Daring to be Different

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Daring to be Different

The Author

Amanda Bates

The fourth and final blog in our Halloween series, written by Paddy Adamson, brings together the key themes of Hollywood and disfigured faces. As a researcher in film, and a member of Face Equality International’s Lived Experience Group, Paddy brings a unique perspective to the topic. Don’t miss the rest of the series, starting with Fay Bound Alberti’s introduction, Sara Wasson’s blog on Les yeux sans visage and Lauren Stephenson’s analysis of The Eye. Let us know what you think!

Daring to be Different

Dr Amanda Bates, CPsychol, is a Patient Experience and Public Involvement Lead in the Centre for Health Services Studies at the University of Kent. She brings health researchers and service users together to enable patient involvement in the design and management of research using best practice principles of Patient and Public Involvement (PPI). Aside from these roles, Amanda conducts freelance training in disability equality, resilience and living with difference. As someone with a facial difference from birth, Amanda is also involved with the charities Changing Faces, The Cleft Lip and Palate Association (CLAPA) and Face Equality International and has carried out media work on behalf of all three organisations. Amanda sits on our Lived Experience Advisory Panel (LEAP).

Daring to be Different

Despite numerous surgeries in my childhood and teenage years owing to a cleft lip and palate (and other differences), staring strangers and intrusive questions, I rarely spoke about my appearance and what it meant to me. Although I was okay with my reflection, I had put my appearance–my face–and therefore a significant part of who I was-in a box and locked the lid so tightly that opening it seemed an impossibility.

How I relate to my appearance has changed over time (flipped 180 degrees actually) but eventually I found my voice as a self-advocate, grew into my own skin and ultimately learned to like who I was, as a whole person.

As a child/teenager, I was seen as someone who generally coped well, was sociable and ‘lived’ life. It was presumed I’d accepted my difference. Far from it I’m afraid; it wasn’t until my early 20s that I started grappling with the issues.

Why did I separate my appearance from myself and my identity for so long? Well, difference was a taboo subject in my family. My Mum and I were busy protecting each other by not discussing it and my Dad founded the British stiff upper lip society. Therefore, I assumed people didn’t want me to talk about it as it was difficult for them.

Growing up, difference scared me as I assumed it was always a bleak, woeful experience, something to be avoided and certainly to never identify with. Multiple signs reinforced this; being bullied, rarely mixing with anyone who was different, media stereotypes, never seeing disabled people on television…the list goes on. When at times I was forced to face my difference (usually via bravery awards – well-meant but utterly mortifying) or by people telling me they would ‘throw themselves off a cliff’ if they were me, I saw it as a reluctant, unwanted challenge and would shake it off pronto.

A traumatic thread running through everything was surgery. Healthcare culture is mostly different now but growing up I had no say and felt I was on a treatment conveyor belt whereby surgeons were determined to ‘correct’ my appearance, regardless of my feelings. The many required ‘corrections’ surely meant my difference was far from desirable? Given everything, it’s unsurprising that to cope, I locked my face away so it was a separate entity to my being; I had no reason to see it positively, to embrace it as part of my identity, why would I?

The catalyst for change happened when pursuing a health psychology qualification. I deliberately chose a course that incorporated the topic of visible difference so at some level of consciousness I must have wanted to explore these issues, albeit in a ‘removed’ way via academia. Rather inevitably however, when suddenly immersed in a culture where it was acceptable and encouraged to talk and write about visible difference, I was no longer able to hide from myself. My ensuing emotional reactions were immensely powerful and cut deep. Letting go of the well-rehearsed, protective mechanism of projecting myself as someone who wasn’t different in any way, shape or form, was, for a time, catastrophic.

I felt isolated and on display, terrified I would be asked to talk about appearance issues. I started counting the number of times I was stared at. My difference, although always evident to others, was newly noticeable to me and I started to reflect upon my family and hospital experiences. A fuse had been furiously lit within me and I knew my perception of myself and my past was changing; I was powerless to stop it. I realised I couldn’t continue to separate myself from my difference–it was a significant part of my identity. I reached out for support from friends, family and professionals who all answered the call.

With time and support, I realised I wasn’t born knowing how to cope with looking different. None of us arrive with a handbook (if only!) and much less support was available when I was growing up compared to nowadays. I just lived my life; I didn’t question how and why I did things a certain way.

Talking with others gave me permission to explore my difference and related issues in a way that I hadn’t ever done. I gave myself permission to talk and to feel, too. In time, my experiences at last felt validated and understood. I started working for a disability rights organisation and volunteering for visible difference charities; these strands further enabled me to grow into my own skin, find my voice and explore societal views about difference.

Facing my past and processing all that had happened allowed me to embed my appearance and related experiences into my identity. It was a lengthy and difficult process, but a liberating, rewarding and ultimately empowering one. I stopped counting the number of times I was stared at and went on to deliver disability equality workshops and take part in media interviews about appearance diversity. Quite a journey…

How anyone deals with their difference is of course a personal issue and no-one should be forced to feel a certain way about it. I just chose a path that was ultimately right for me.

Difference is perfectly normal and should be respected as such. Not hidden, not dehumanised, not infantilised. Societal perceptions and images around difference have started to change, but there is still some way to go to achieve Face Equality. We all have a role to play to facilitate positive changes so people living with difference don’t feel they have to hide either all, or part of themselves, away.

Have open and honest conversations with friends and family about difference, embrace the normality of it. Start early, talk with children about it. Don’t cross the road or sweep the issues under the carpet, making difference awkward and shameful. Treat others as you would wish to be treated. Respect and value difference.

That’s enough from me, so over to you…what will you do to help bring about Face Equality?

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Visualising Evil: Depictions of Visible Facial Difference in Film Culture

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Visualising Evil: Depictions of Visible Facial Difference in Film Culture

The Author

Dr Sarah Hall

Facial scarring has long been used in the film industry to imply evil or villainy. In this blog, Dr Sarah Hall (University of York) explores the damaging effects of this outdated trope.

Visualising Evil: Depictions of Visible Facial Difference in Film Culture

At a pivotal moment in Star Wars: The Rise of Skywalker, the antagonist of the sequel trilogy, Kylo Ren, is healed of the facial scar that he received in The Force Awakens. That scar, which had mysteriously moved across Ren’s face by the time that The Last Jedi was released, was inflicted after the antagonist committed his darkest act in that film. That the scar healed as Ren was brought back to the light side was no afterthought. The appearance and disappearance of the scar represented Ren’s character progression from troubled, to unquestionably, abhorrently and violently evil, and back to redemption.

Visual Clues

It is a familiar trope. There is a long history of popular film culture relying on facial difference, particularly scarring, to denote villainy. Viewers are inundated with visual references to remind us of the immorality of the antagonists that occupy our screens, and the final Star Wars instalment continued to cement the narrative that a wounded face is a signifier of evil. To really bring the point home, we should perhaps remind ourselves that Ren’s redemption story failed to offer up any real reasoning for his change of heart, only that he was moved by protagonist Rey’s decision to heal him. The scar, then, becomes a primary signifier of his redemption. Not only is it a visual clue for the viewer, but its removal forms an emotional foundation for change from bad to good, dark side to light.

Star Wars is set in a galaxy full of archetypes. Good and evil form the balance on which numerous characters teeter in all three trilogies. However, this familiar simplicity should not prevent us from questioning why popular film repeatedly returns to this tired trope.

Scarring and James Bond

I am new to the AboutFace project. I will admit to not having thought critically about this issue in any depth until recently. It is something that I’ve had a background awareness of, I think you’d be hard-pressed to find someone that isn’t, but I’ve been afforded the privilege of not being directly impacted by these issues. Since joining AboutFace in March, I have been thinking about faces, facial difference, facial injury, surgery and their representations more than I ever thought I would. All of a sudden, the presence of villains with facial scarring became excruciatingly apparent. My timing was perhaps partly to blame.

After seeing a trailer for the new Bond film, No Time to Die, I decided to tackle my entrenched dislike of the Bond franchise and watch all of the Daniel Craig films before the release of the latest instalment, which was due in April but has been pushed back to November due to the Covid-19 pandemic. I was surprised. I did enjoy the films, but they also made me uncomfortable.

The Bond series is especially wedded to the trope that scars, burns, and other facial injuries signify evil. Even if you just take the recent releases, you can’t help but notice the trend: Mads Mikkelsen’s La Chiffre in Casino Royale; Javier Bardem’s Raoul Silva in Skyfall; Christoph Waltz’s Blofeld in Spectre (back for a second instalment in No Time to Die); and if one scarred villain wasn’t enough for No Time to Die, Rami Malek has also joined the cast to play a terrorist leader with an injured face, partially covered by a mask. That two facially scarred villains were written into a single film might suggest that the 25th Bond instalment may not, as hailed, be the ‘most woke yet.’ It might be fair to say that Bond films are not known for their subtlety or nuance, but these are villains played by talented actors whose abilities need not be augmented by visual scarring. Why, then, do producers continue to rely on this trope?

Credit: MGM/Columbia Pictures

The face, identity and history

The history of this association goes back further than you might imagine. Beauty ideals have long contributed to the notion that beauty equates with goodness and ugliness with evil, stemming from the classical world. While beauty ideals may have shifted over time, there is a consistent connection between the face and identity. In the early modern period, the face also carried deeper suggestions of honour, and severe facial difference or injury often carried dehumanising associations. The connection between villainy and facial scarring or difference is not new, it was not invented by film companies, though it has become their bread and butter.

These cultural and emotional histories have also been influential in contemporary medical intervention. It has been suggested that negative responses to facial difference could have emerged from a cognitive threat detection mechanism. Health professionals working on the human face, whether in psychology, dermatology or surgery, have drawn connections between disgust and facial disfigurement. Perhaps, then, producers and writers in the film industry are just playing on recognised human responses? But the argument that disgust is somehow an evolutionary response does not take into account the fact that disgust sensitivities are far from static throughout history, that ‘disgust’ is subjective, dynamic, and emotionally and culturally influenced. Is it not time to give current cinema audiences the credit that they might be able to work out which character is the villain without facial scarring?

A ‘historical document’?

In an article for The New Yorker, David Owen wrote that over time, the body becomes ‘a kind of historical document.’ Dramatic moments are memorialised in scar tissue. It rings true for scars in film. Scars can be illustrations of a traumatic incident that either marks the point of descent into evil, as with Kylo Ren, or they might signify a past event in a character’s life that has contributed their villainous state. Suggesting stormy lives, filled with pain or violence, think Heath Ledger’s Joker in The Dark Knight, scars are visual clues to a villain’s (sometimes complex) backstory. All too often, however, the scar is little more than a device to make a character appear more sinister, as with the surprisingly superficial Isabel Maru played by Elena Anaya in Wonder Woman (2017). I say surprisingly, because the film was so widely praised for its progressive outlook. The suggestion in this case is that Maru is evil from the outside in.

But while there may sometimes be a rationale for choosing to give facial scars to on-screen villains, this does not negate the significant negative stereotypes that can be associated with visible facial difference as a result. In a video produced by the Guardian, the notion that scars are representative of past trauma is reinforced. However, the speakers remind us of some of the painful reactions people have had to their scars. Whether the scarring serves to reveal the hidden depths of a villain to the audience, or if it solely serves as a visual clue for evil, the association strengthens the notion that a visible facial difference marks the bearer as unfamiliar to many audience members, defining them as ‘other.’

#IAmNotYourVillain

UK charity Changing Faces sought to challenge this tired trope in 2018 and have continued fighting for change on our screens ever since with their #IAmNotYourVillain campaign. Their call for action followed numerous studies that highlighted the negative association between visible facial difference and villainy on-screen. The charity’s CEO, Becky Hewitt, told the Guardian that young people don’t tend to make the association between facial difference and negative traits until they are exposed to popular media representations. This would suggest that the prejudice is learned, and possibly at a young age.

AboutFace hopes to contribute to the efforts set in motion by Changing Faces, challenging prejudice and misconception as part of our research, which will explore cultural systems of conformity, beauty and facial perfection in the age of the selfie both through academic research and public engagement events. Our Lived Experience Advisory Panel supports us in this work. Their involvement at key milestones in the project will ensure the research is relevant and meaningful to those to whom it matters the most.

Representation

Misrepresentation can be incredibly damaging, but so can a lack of representation. Changing Faces has called not only for fewer negative depictions of facial difference, but an increase in positive representations. They encourage the diversification of occasions of facial difference in film, moving away from the most prevalent villainy or vulnerability. The reasons for this have been powerfully articulated by some of the charity’s champions, such as Tulsi Vagjiani, a plane crash survivor who told the Telegraph that she was compared to Freddy Kreuger when she was growing up. The makeup used to transform actor Robert Englund into the notorious horror villain was based on medical photographs of burn victims, directly connecting real scarring to the demonic Kreuger.

The BFI quickly moved to support the Changing Faces campaign in November 2018, making the decision not to fund films in which the villain has scars, marks and burns. Speaking about the decision, deputy CEO Ben Roberts referred to the criteria in the BFI diversity standards, which call for meaningful representations on screen. In 2019, the BFI helped to fund Dirty God, a film about a woman trying to reclaim her life after an acid attack, starring burn survivor Vicky Knight. The film has been hailed as a strong positive representation and has also had a positive transformative effect on Knight’s own outlook.

This might be new ground for film, but it doesn’t appear to be the herald of a new era. While high-budget, high-profile films like No Time to Die, continue to dominate, can we hope to see any meaningful change in the cinematic representation of visible facial difference? The AboutFace project is seeking to explore the social context in which facial transplantation happens. In doing so, we are drawing attention to the social pressures to look a certain way. This theme of the scarred villain is part of our broader discussions of difference in societies fixated by visual appearance.

Author bio

Dr Sarah Hall is Associate Lecturer in Public History at the University of York. She was previously Public Engagement and Events Officer on AboutFace.

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