Transplant surgery

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. 

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.

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.

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 1^st person ever to receive 2^nd 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.