In the early hours of 28 May 2005, Isabelle Dinoire woke up in a pool of blood. After fighting with her family the night before, she turned to alcohol and sleeping tablets “to forget”, she later said.

Reaching for a cigarette out of habit, she realized she couldn’t hold it between her lips. She understood something was wrong.

Isabelle crawled to the bedroom mirror. In shock, she stared at her reflection: her nose, lips, and parts of her cheeks were gone, replaced by a raw, mangled wound.

While Isabelle was unconscious, her beloved dog Tania, a cross between a Labrador and a Beauceron, had chewed away her features.

“I could see a pool of blood next to me,” Isabelle told the BBC. “And the dog was licking the blood. But I couldn’t imagine that it was my blood or my face.”

On 27 November 2005, Isabelle received the world’s first face transplant at University Hospital, CHU Amiens-Picardie, in northern France. The surgery was part of an emerging field called vascularized composite allotransplantation (VCA), that transplants parts of the body as a unit: skin, muscle, bone and nerves.

Two teams, overseen by Bernard Devauchelle, Sylvie Testelin and Jean-Michel Dubernard, grafted a donor’s nose, lips and chin onto Isabelle’s skull. The donor, a 46-year-old woman, had died by suicide. The donor graft was painstakingly attached: sensory nerves to restore feeling, motor nerve fibres for movement, arteries and veins to establish blood flow. The operation involved 50 people and took more than 15 hours.

The results were presented to the press the following February, when Isabelle amazed the world by speaking through her new mouth and drinking water from a cup. “I now have a face like everyone else,” she said. “A door to the future is opening.”

The case for face transplants seemingly made, several teams scrambled to perform their nation’s first. The US saw the first partial face transplant (2008), then the first full one (2011); the first African American recipient (2019); the first face and double hand transplant combined (2020); the first to include an eye (2023). There have been about 50 face transplants to date, and each milestone brought new grants, donations and prestige for the doctors and institutions involved.

The patients, meanwhile, continue on living as they can. Some of them, like Isabelle, have suffered greatly. Others, like Joe DiMeo, who received the world’s first double hand and face transplant at NYU Langone in 2020, find new ways to forge a career by selling their stories online. But he and his wife Jessica, a nurse, are constantly trolled, and the spectre of rejection never leaves.

For the past six years, I have been researching the history of face transplants, interviewing surgeons and patients in the US, France, China, Spain, Italy, Mexico and Canada. I have contributed to surgical articles and conferences, brought patient voices to the table, and advised on a critical Department of Defense-funded study to regulate all kinds of VCA.

What I’ve found is alarming: it’s a field where negative data is often buried, driven by funding battles and institutional rivalry. In places where publicity functions as marketing, some clinics expose patients to intrusive media attention. Support networks are uneven, and few patients are prepared for the toll of lifelong immunosuppressants. Add to this picture a set of ethical challenges: face transplants take otherwise healthy people with disfigured faces and turn them into lifetime patients.

People tend to remember a dramatic “before and after”. The reality is different.

Dallas Wiens thought he’d won the medical lottery when he became America’s first full face transplant recipient in 2011. The 25-year-old electrician was electrocuted while painting a church; this destroyed his face and his sight. Dallas worried that his daughter Scarlette would be bullied for how he looked. He wanted to give “something back” to veterans. He wanted to be able to hail a cab.

Like Isabelle, Dallas was grateful to his donor and surgeons. He attended medical conferences so surgeons could see the results. He met prospective patients and was courted by global media as proof that face transplants worked.

For several years, the narrative held; then reality intruded.

The anti-rejection drugs that kept his new face alive destroyed his kidneys. Dallas had repeated episodes of rejection, each requiring stronger immunosuppression. He lived in Texas, in poverty, with his beloved wife Annalyn, who was also blind. Dallas’ primary medication alone cost $120 per month, a significant expense on disability benefits.

“It’s one thing to be told about risks,” Dallas told me when his kidneys were failing. “It’s another thing to experience them.”

In the US, now the world’s leader in face transplants, the Department of Defense has bankrolled most operations, treating them as a frontier for wounded veterans while private insurers refuse to cover the costs.

With insurance unwilling to pay until the field proves its worth, surgeons have been eager to show results. A 2024 JAMA Surgery study reported five-year graft survival of 85% and 10-year survival of 74%, concluding that these outcomes make face transplantation “an effective reconstructive option for patients with severe facial defects”.

Yet patients like Dallas tell a different story. The study measures survival, but not other outcomes such as psychological wellbeing, impact on intimacy, social life and family functioning, or even comparisons with reconstruction.

Most surgeons care about their patients, though they will have their own personal ambitions. Globally, there are perhaps 20 (mostly male) specialized surgeons capable of face transplants; nobody could become part of that elite group without ambition, for themselves, and for the field. And what can they do, surgeons say, if the system doesn’t provide?

It’s a double-bind. Without proof of success, face transplants are experimental. And because the procedures are experimental, patients’ long-term needs aren’t covered by grants, leaving patients to carry the burden.

“I don’t have $100 for Ubers to and from hospital,” Dallas said, explaining how public transport led to infections, given his weakened immune system, and infections could make his face reject. “But if I don’t attend, it can be seen as non-compliance. Is that fair?”

On 27 September 2024, Dallas died suddenly at his home in Fort Worth. His death certificate lists complications due to electrocution, his original 2008 accident. His wife Annalyn still doesn’t know what happened. “His body gave up,” she said. “He was constantly tested and made to feel like a guinea pig. I wanted his body to be left alone.”

Annalyn had Dallas’ body cremated quickly, fearful that the DoD or Yale would want it for research. Neither did, but it says something about the gap between surgical intentions and patient experiences that this was her fear.

That fear was also expressed privately to me by a member of Isabelle’s immediate family, who wants to remain anonymous. From their perspective, Isabelle’s face transplant was not a success, despite launching an entire field.

In fact, nobody expected France to do the first face transplant. Those in the know presumed it would be Cleveland Clinic, where Maria Siemionow had spent years refining the method and the ethics.

In contrast, Devauchelle’s first application for ethical approval was rejected. In the early 2000s, French ethicists were, like those in the UK, concerned about immunosuppressant risks – and psychological ones. How could anyone cope with seeing another person’s face in the mirror?

For his next, successful bid, Devauchelle teamed up with Dubernard, who was not only an influential member of the French National Assembly, but also the surgeon who had made history in 1998 with the world’s first hand transplant. And making history has always brought glory, especially for transplant surgeons.

What of Isabelle? Three months before her operation, she signed a contract with British documentary maker Michael Hughes, agreeing to let cameras document her transformation in exchange for payment. The Times of London revealed this deal, showing how a vulnerable, suicidal woman with no face had been effectively “sold” even before surgery. Isabelle was swayed by the promise of a bright future, though that never transpired.

Describing how he watched the blood flow into Isabelle’s lips in surgery, Dubernard compared himself to the prince who awakened Sleeping Beauty, adding: “I still see her image among the stars in my dreams”.

Isabelle felt less like a princess than a circus animal. After the transplant, she spoke of being tormented: “Everyone would say: Have you seen her? It’s her. It’s her … And so I stopped going out completely.”

Living with a stranger’s face was as psychologically difficult as ethicists feared. Two years after the transplant she spoke to the strangeness of having “someone else’s” mouth. “It was odd to touch it with my tongue. It was soft. It was horrible.”

And then one day she found a new hair on her chin – “It was odd. I’d never had one. I thought, ‘It’s me that has given it life, but the hair is hers.’”

Surgeons and ethicists observed that Isabelle wasn’t given proper alternatives, and she wasn’t in a good state of mind; the most the French team has conceded is that she wasn’t an “ideal patient”.

Isabelle might have fared better in a country like Finland, where transplants are anonymous. Patients and families are not harassed by journalists – as Isabelle and her family were – and clinics don’t use patients as media opportunities.

Instead, Isabelle never resumed a normal life, never returned to work or good mental health, and from 2013 experienced regular episodes of rejection. In 2010 she contracted cervical cancer, followed by lung cancer. She died in 2016, though her surgeons deny this was connected to immunosuppressant use.

In fact, Isabelle’s face died before she did; after it became necrotic, it was removed and replaced with a graft from her thigh. As she told her family, she “didn’t want to die without a face”.

I also learned from Isabelle’s immediate family member that her wellbeing declined dramatically after her transplant, and that she was in “psychological distress” when consenting for the procedure. “They took her away from us, so we didn’t have the power to dissuade or counsel her.” And after each psychiatric appointment, she would come home “at the lowest, full of guilt and suicidal desires”. More than once, according to her, she attempted suicide after her transplant; this story isn’t part of the record.

Robert Chelsea, the first African American to receive a new face, wanted to kiss his daughter’s cheek. Now he can, but his daughter can’t look at him the same way.

“Only when he opens his mouth, I know it’s him”, she says, otherwise he’s a stranger. Today, Robert is in and out of hospital and unable to find income.

Robert knows race makes a difference – the sinister history of medical experimentation on Black bodies means African Americans are less likely to donate organs of any kind. And scientific medicine privileges whiteness; until Robert’s surgery, the hospital hadn’t considered that donors with a wide range of skin colours were needed.

Once a successful businessman, Robert is now reliant on GoFundMe campaigns; his car has been repossessed, and he can’t get to church. He suffers through rejections and infections, and he cannot afford caregivers. Sometimes, he gets so weak he can’t even call an ambulance. And if he did, that would be an extra cost he can’t afford either. Aftercare is the biggest issue for US face transplant recipients. Yet the JAMA study only measured outcomes by graft survival; not whether patients could work, afford medications, maintain relationships. It did not track financial ruin, mental health or quality of life. It counted 10 deaths but not how people died or what their final years were like.

No one tracked Dallas’s failing kidneys or Robert’s repossessed car.

These patients are pioneers. During the second world war, plastic surgeon Archibald McIndoe treated severely burned pilots. His patients formed the Guinea Pig Club, a brotherhood that acknowledged their experimental status openly. They received lifelong care, peer support, and recognition for their contribution to advancing surgery. We can’t say the same for face transplant recipients.

One question remains: how can science and medicine ethically innovate, without knowing what has gone before?

Most innovation follows the same trend: the possibility is raised, there’s ethical debates, someone breaks cover and there’s a race to join in.

These innovations usually end one of three ways: they fade quietly into history, they implode in scandal, or they mature into a stable, standardized practice.

Reality is now forcing that question for face transplants. Roughly 20% of patients have died – from rejection, kidney failure, heart failure. That’s an unacceptably high toll for an elective, supposedly “life-enhancing” procedure, especially when we still can’t agree on who is an ideal candidate, how to measure success, or what long-term support actually looks like.

We have seen this before – in lobotomy, a field that faded out. The Portuguese physician Egas Moniz won the Nobel Prize for developing lobotomy in 1949 and 3,500 brutal procedures were performed.

The same arc unfolded for vaginal meshes in the 1990s. Introduced with great fanfare, they caused chronic pain and organ damage, led to millions in lawsuits, and became synonymous with prioritizing profits over patient safety. Unlike face transplants, vaginal mesh victims found strength in numbers – 100,000 alone in the US took legal action.

A more successful innovation story is IVF, which moved from controversial “test-tube baby” experiments into mainstream medicine by rigorous patient selection, improved safety standards, and proper regulation – all of which were led by surgeons.

Which path will face transplants take? The numbers are already slipping – fewer procedures since the 2010s as outcomes falter and budgets shrink. And unless the field raises its standards, enforces rigorous follow-up, and commits to transparent, systematic data sharing that actually includes patients and their families, there’s no way to demonstrate real success. Without that, face transplants aren’t headed for evolution or stability; they’re headed straight for the dustbin of medical history.

Isabelle’s loved one is watching closely. It is not easy for her to speak out, even now, for fear that the family will be harassed by journalists. But, she says, “I must find the strength.”

“Isabelle did not want the transplants to continue. She had collected documents to prove the various dysfunctions and told me that after her death I could talk about everything because during her lifetime, she feared the medical team, the pressure was too strong.”

She felt obliged to be upbeat, to represent innovation success, whatever the cost – an insurmountable amount of pressure for someone who is already vulnerable

“You only hear from the complainers,” one delegate told me earlier this year, after I spoke at a talk to face transplant surgeons at an international conference in Helsinki. “The happy patients are quietly living their lives.”

Such claims are meaningless without accurate data. And patients are often scared to tell surgeons the truth; even without the power imbalances of healthcare, people feel ungrateful or worry about being a “bad patient”.

Yet they are the only ones who know if face transplants are a success. They are the ones who live with the reality of a face transplant after the news has broken and the cameras move on.

Are things changing? Not fast enough. The same pattern repeats with each innovation: surgeons pioneer, patients sacrifice, papers get published, the field moves on.

I saw Robert recently in an online meeting to discuss a Department of Defense grant aimed at improving standards. He had recently left the hospital after another round of rejection, and was one of three patients sharing experiences.

He looked tired and unimpressed.

“Everybody here is getting paid,” he said. “Except us. Who is feeding our children, while we are making history?”

Fay Bound-Alberti is professor of Modern History at King’s College London. Her new book, The Face: A Cultural History will be published by Penguin in February 2026