Beyond recognition: the incredible story of a face transplant218
For Carmen Tarleton, the day started out normally enough. Tarleton, 45, had errands to run, a piano lesson to get to, a house to tidy. Tomorrow was Valentine’s Day, and for the first time in a long time — the first time since the attack five years earlier — she looked forward to spending it with a new boyfriend. And then everything changed. The phone rang, and Tarleton’s surgeon gave her the news: after more than a year of searching, doctors were optimistic that they’d finally found her a new face.
That same day, more than 100 miles from Tarleton’s home in the bucolic hills of Thetford, Vermont, 30-year-old Marinda Righter was flipping through the pages of an old anatomy textbook in her apartment. Her mother, Cheryl, had days earlier slipped into a coma following a massive stroke that robbed her of brain function. As plans were outlined for organ donation, doctors at the local hospital approached Righter with a startling question: when they took her mother off life support, would she also consent to giving away Cheryl’s face? With five minutes to make up her mind, Righter locked herself in her home office and looked to the pages of that book. She marveled at the intricacy of the human body, at the complex tangle of nerves, muscles and skin that comprised a single face. She imagined what her own mother’s face, already drained of life, could restore in someone else.
Less than 24 hours later, at 5AM on February 14th, 2013, Carmen Tarleton was wheeled into an operating room at Brigham and Women’s Hospital in Boston, MA, for an experimental procedure that would replace her own scarred, mangled face with that of recently deceased 56-year-old Cheryl Denelli-Righter. If the surgeons succeeded, Tarleton would become just the seventh American patient to undergo a risky, experimental procedure known as a face transplant.
The world’s first face transplant took place eight years ago, on November 27th, 2005. Surgeons in Amiens, France, spent 15 hours delicately transferring skin, muscles, bones, and blood vessels from the face of a brain-dead suicide victim onto the skull of a 38-year-old woman. The face of that patient, Isabelle Dinoire, had been mauled by her dog after Dinoire, herself reportedly suicidal, blacked out following an overdose on sleeping pills.
Since that groundbreaking procedure, which spawned a torrent of media coverage and elicited fierce ethical debates, some 30 patients around the world have received face transplants. The procedures themselves are at the frontier of modern medicine, but their inspiration — and the research that transformed them from science fiction to reality — stretches back nearly 50 years. "This has been my dream; it has been the dream of many people for a very long time," says Jean-Michel Dubernard, MD, one of the surgeons who performed Dinoire’s procedure. "It has always been the goal."
In 1965, Dubernard spent two years at Brigham and Women’s Hospital as a research trainee under Dr. Joseph Murray — a pioneering surgeon credited with performing the first successful human organ transplant and making marked progress in skin grafting and facial reconstruction. During his stint in Boston, Dubernard recalls seeing Murray’s enthusiasm over the outcome of one patient, Charles Woods, a 22-year-old Army pilot whose face was ravaged in a plane crash during World War II. "He said to me, ‘Isn’t this an amazing result?’" Dubernard recalls of the patchwork of skin grafts used to remodel Woods’ face. "And I told him, ‘Yes, this is good. But you know what? A face transplant would be better.’"
"This has been my dream; it has been the dream of many people for a very long time."
Over the next four decades, researchers made slow strides towards eventually realizing Dubernard’s far-out ideal. An enhanced understanding of the human immune system yielded new drugs to prevent the body from rejecting foreign tissues. Techniques in microsurgery allowed unprecedented surgical control over delicate bodily structures. And as the transplantation of solid organs, like kidneys and hearts, became a standard-of-care, surgeons started to seriously contemplate the next logical step: rather than confine themselves to transplanting these organs, could they also replace intricate, extensive combinations of skin, muscle, nerve, and bone?
In 1998, Dubernard answered that question when his team became the first in the world to successfully transplant a human hand onto the amputated limb of a 48-year-old man. The procedure was a pivotal turning point, and the field of what’s known as composite tissue allotransplantation started moving at a breakneck pace. In rapid succession, surgical teams around the world duplicated Dubernard’s success: between 1998 and 2005, the year of the first face transplant, 18 patients underwent hand transplantation procedures. Medical teams in several countries, including Spain, the US, Turkey, China, and the UK, then started laying the groundwork for face transplants of their own. And by the time Tarleton lay in an operating room for her own procedure, she would join more than two dozen patients — each with a unique mosaic of inconceivable scars, grafts, and missing pieces — that are pushing the field even further.
Like the patients who came before her, Tarleton’s journey has been something of an unfathomable one. In the summer of 2007, she was the victim of a brutal attack perpetrated by her ex-husband, Herbert Rodgers. He broke into her home in the dead of night, carrying a baseball bat and a bottle of industrial-strength lye. He used both, and he didn’t stop until Tarleton had sustained what one doctor later described as "the most horrific injury a human being could suffer."
Tarleton awoke from a three-month induced coma in September of that year. Her body, marred by deep chemical burns, was wrapped in bandages and covered in grafts — some taken from cadavers, the rest harvested from her own legs. Her eyelids were gone, as was her left ear. She couldn’t blink, smile, or breathe through her nose.
Her face would never look the way it had beforeDr. Bohdan Pomahac
During that coma, doctors performed 38 surgeries to repair what deficits they could. And over a period of five years, she would undergo another 17 operations, including a series of synthetic corneal implants that eventually restored partial vision to one eye. Despite these efforts, Tarleton’s progress eventually stalled — given the limitations of conventional procedures, it was impossible that full facial functions, from movement to sensation, would ever return. And her face, there was no question, would never look the way it had before. "I had forgotten what it was like to look more normal," she says. "I had to accept that I would always look this way, and I had to be okay with that."
Ironically, it wasn’t until Tarleton had cultivated this acceptance, she says, that the prospect of a face transplant emerged. In December of 2011, she received a striking proposition from Dr. Bohdan Pomahac at Brigham and Women’s Hospital in Boston. He had recently performed the first successful full face-transplant in the US, and he wanted to know if Tarleton would consider the procedure.
It wasn’t an easy answer. Before being approved for a face transplant, Tarleton would need to travel two hours from her home in Vermont to Boston, several times over several months, for extensive physical and psychological exams. Doctors needed to be sure that her immune system could cope with the procedure, and assess the blood vessels, nerves, and muscles deep within her skull. A team of psychological experts would evaluate Tarleton’s mental health and the strength of her support network. The procedure itself would be grueling and dangerous, and the rehabilitation process would be extensive. But the payoff — the prospect of eyes that could blink, a mouth able to kiss — would transform her life.
Several months after that call, Tarleton had cleared every hurdle, and her name was added to a waitlist while surgeons scoured for viable donors. To meet the criteria, a donor had to be brain dead with no prospect for recovery — the harvested tissue needs to be flushed with blood and nutrients until the last possible moment — and be an adequate match for Tarleton’s skin tone and texture, as well as her age and sex. In her case, it took 14 months before that donor, Cheryl, was found.
In the US, there are five institutions — Brigham and Women’s Hospital, the Cleveland Clinic, UCLA, the University of Maryland, and Johns Hopkins University — that are now either performing face transplants or actively recruiting their first patient. And for the surgeons leading these charges, the process has long been an all-consuming one. "If you only knew how much work goes into every single one of these," says Dr. Kodi Azari, chief of reconstructive transplantation at UCLA. "You can’t even imagine."
Before any of these institutions were established as hubs for the burgeoning field of face transplantation, leaders in the field needed to prove that the surgeries were feasible. That meant dozens of trials on animal models, swapping one monkey’s face for that of another, as well as on human cadavers, before considering clinical trials on human patients. Organ donation registries were initially slow to adopt to the field, and declined to list face transplant candidates for four years after the first American institution, the Cleveland Clinic, was in 2004 approved for a trial. Financing the surgeries posed yet another challenge: each transplant costs around $350,000, none of which is covered by private insurance.
"These patients just want these very basic abilities returned. They just want to fit into a crowd."
That’s where the Pentagon came in: in 2008, after surgeons at the Cleveland Clinic absorbed the costs of their first face transplant, the military offered up $6 million in funding for two clinical trials, one at Cleveland Clinic and the other at Brigham and Women’s Hospital, to kickstart more surgeries. "Our interest in this was catalyzed by the injuries sustained by our service members," says Col. John Scherer, director of the military’s clinical and rehabilitative medicine research program. "But I think anyone will tell you that the benefits here extend far beyond our community."
Indeed, for patients who eventually qualify for a face transplant, the procedures are nothing short of life-altering: among the American patients who’ve already received a face transplant are James Maki, who fell onto an electrified third rail in a Boston subway station, and Connie Culp, who was shot in the face by her former husband. All of them had already undergone dozens of earlier surgeries, and all of them had reached a dead end. "There’s no other way to restore these people," Azari says. "These patients just want these very basic abilities returned. They just want to fit into a crowd."
"That’s how you know the face is alive, and the surgery has worked."
Face transplants remain experimental procedures, but surgeons have established a relatively consistent protocol for their undertaking. Once patients complete qualifying exams, their surgical team — typically between 8 and 12 experts, not including several dozen support staff — creates 3D models and computer simulations to map out that patient’s face and plot the myriad cuts and connections they’ll need to make. From there, surgeons often practice the procedure on pairs of donated cadavers "until we can do it in our sleep," Azari says. "These operations are not quick dives," he notes of the procedures, which have run anywhere from 15 to 36 hours. They’re extremely long [and] technical, and every single step counts."
A patient is only added to organ donor registries when this preparation is complete, and surgeons are confident that they can do the procedure within hours of a viable donor becoming available. When that donor is found, there’s no turning back: the patient arrives at the hospital within a day, and is typically moved into an operating room adjacent to another OR where the donor’s body waits. Two teams of surgeons begin the procedure in tandem: one group carefully strips the donor’s face of every necessary component, while the other removes the damaged layers of tissue from the patient. "You have what is basically a mask from the donor and you bring that into the patient’s operating room," says Maria Siemionow, MD, who leads the Cleveland Clinic’s face transplant program. The next step is critical: surgeons hustle to reconnect the arteries and veins from that mask with the patient’s blood vessels. If they do it right, that white mask flushes with pink. "You don’t know until you see the blood coming back," Siemionow says. "That’s how you know the face is alive, and the surgery has worked."
With blood flowing to the transplanted face, surgeons carefully link intricate networks of nerves and muscles — each one vitally important to restoring functions like blinking or breathing — before completing the final step: fitting and stitching the actual skin onto the patient’s skull.
Risks of surgery
Chronic rejection hasn’t occurred yet, but patients face a serious risk that their immune system will reject the new facial tissue. In the case of persistent rejection, the transplant would need to be removed immediately and entirely.
Patients are prescribed a lifelong regimen of immunosuppressive drugs, which are accompanied by an increased risk of several illnesses. Among them are cancer, diabetes, kidney failure, and infection.
As the most visible part of the human body, the face plays a vital role in personal identity. Experts are still debating the extent to which a face transplant mars a patient’s sense of self, but note that it can take months for one’s face to become "my face" rather than "the face."
The exhaustive procedures aren’t without risks, particularly in the cutting and reattachment of muscles, nerves, and blood vessels. One botched cut might mean that a patient so desperate to smile or blink again won’t have the opportunity. But the more significant dangers and uncertainties only arise once the procedure is complete: will the patient’s body accept or reject the transplanted tissue, and how will the patient’s psyche cope with the jarring transformation of their own appearance?
For Tarleton, the former concern proved more precipitous than the latter. She was always a particularly risky case from an immunological perspective. After undergoing so many skin grafts and blood transfusions, Tarleton’s body had developed a diverse array of antibodies — immune proteins that fend off invaders. Because her immune system was primed to fight just about any foreign tissue, doctors had an exceptionally difficult time finding a viable donor. "Given her history of exposure to multiple other human products, she would easily reject tissue," Pomahac says. "We knew it was going to be an uphill battle … but we were willing to try."
Cheryl’s face was the best match that surgeons had found for Tarleton, but it wasn’t perfect: Tarleton’s body was already producing some key proteins that might fight off the transplanted tissue, and Pomahac estimated that the procedure carried up to a 20 percent chance of failing completely. If it did, surgeons would be forced to remove the transplanted tissue, leaving Tarleton with some variation of the disfigured face she’d had before the procedure.
Indeed, shortly after Tarleton’s transplant was completed, her body mounted a robust defense. Doctors spent six weeks desperately pumping Tarleton’s body with an array of immunosuppressants, one of which carried an elevated risk of fatality, until they finally subdued her immune system.
That uncertain period now two months behind her, Tarleton has embraced her recovery with vigor. She undergoes routine sessions with speech and occupational therapists, and can close her lips, move with greater ease, and speak more clearly than she has in six years. "Every week, it feels better," she says. "I can do a little more, I can pronounce words a little better. I’m thrilled."
1. Finding a donor
It can take years for doctors to find the right donor for a given patient. They need to match for skin color, texture, relative age, and sex, and look for donors who have complimentary antigens — proteins that trigger the immune response — in an effort to minimize rejection risks. Donors also need to be both on life support and brain dead, because doctors need a face with an active blood source.
2. Removing the face
A team of surgeons carefully strip away the donor’s skin, along with any muscle, veins, arteries, nerves, and bone that the patient needs for a successful transplant. Those components are moved, on ice, to a separate operating room.
3. Replacing the face
Another team will have already stripped the patient’s face of earlier skin grafts, bone plates, and any damaged tissue. Then, they connect the patient’s major arteries and veins to those from the donor face, bringing the face "back to life." Once that process is complete, surgeons use screws to affix any necessary bones, carefully attach nerves and muscles, and then sew the donated skin onto the patient.
4. The final result
A patient’s new face won’t closely resemble that of the donor. Instead, it’s typically described as "a hybrid" of the donor’s appearance and the patient’s former appearance.
The potential ramifications of face transplants have been apparent since before the very first procedure, and every new patient combats a unique array of physiological and psychological challenges.
From a clinical perspective, the outcomes of face transplant patients thus far have been nothing short of a medical marvel. Patients can expect up to an 80 percent restoration of facial function: those who were fed by a tube to the stomach can now dine with a knife and fork; others who couldn’t speak coherently are once again able to articulate themselves; and abilities as seemingly simple as smiling, kissing, or breathing are, thanks to intricate surgical techniques, once again a routine part of day-to-day life.
But those functional outcomes come with a price. Any patient who undergoes the procedure will for the rest of their lives ingest a cocktail of immunosuppressant drugs — a necessary evil that prevents their bodies from rejecting the foreign tissues comprising their new faces. The prescriptions are far from benign: they yield an increased risk of multiple illnesses, including opportunistic infections, some types of cancer, and kidney failure. "That’s the gorilla in the room. That’s what keeps me up at night," Azari says. "You’re basically taking an otherwise healthy person, and you’re giving them drugs to impair that health."
This ethical conundrum is unique among transplant cases. Where solid organ transplants are concerned, patients can either receive a new organ — and take a barrage of immunosuppressants for the rest of their lives — or else they can die. But face transplants aren’t a life-saving procedure, save for one Polish surgery earlier this year, which adds a murky layer of ethical uncertainty for surgeons to contend with. "You can go on with your life without a face," Azari says. "But will your life be as rich as it might be otherwise? Personally, I don’t think so."
Researchers are still tracking the small cadre of face transplant patients in an effort to determine just how detrimental those immunosuppressant drugs are to overall health and life expectancy. So far, they’re confident that any potential downsides are outweighed by the functional benefits of the procedure. "Patients are willing to subject themselves to the risks, to have a better life," Potomac says. "What we already know is that they do remarkably well. Even though there are potentially dangerous side effects ... there is no question that the fear is greater than what we are observing as problems."
Where quality of life is concerned, however, mental health experts have long conveyed reservations about the potential ramifications of such procedures. "This is a psychological bombshell," says Carla Bluhm, PhD, author of Someone Else’s Face in the Mirror: Identity and the New Science of Face Transplants. "These are victimized, disfigured people when they enter the operating room, and when they leave, that identity shifts so suddenly."
Cost of a single face transplant
Surgical team: 55
Hours in surgery: 22
Cost of the transplant: $349,950*
Drugs prescribed post-surgery: 15
Drug costs per year: $38,574*
Source: American Journal of Transplantation
*each '$' represents $5,000
In particular, the psychological implications of a face transplant have hinged on the appearance of the patient following their procedure. They won’t resemble their former selves, nor will they look like the donor whose face they’ve received. So how will they cultivate a renewed sense of self — one that encapsulates the faces they’ve seen in the mirror up to this point, and that also acknowledges the foreign parts now constituting their profile?
"These are victimized, disfigured people when they enter the operating room."
Psychological care can, to some extent, help patients contend with these challenges: as part of the face transplant protocol, patients continue to meet with mental health experts for months following the procedure. And so far, experts say that early fears of so-called "identity transfer" — that a patient will see the donor’s face rather than their own — have been largely unfounded. Because the patient’s new face is something of a hybrid, and because they’ve already experienced significant changes to their appearance prior to the transplant, they seem largely able to incorporate this new face into their existing sense of identity.
That’s not to say, however, that experts yet have a firm understanding of exactly what a face transplant patient undergoes — or how to help them grapple with their unique circumstances in the years and decades to come. "Surgeons will say, ‘We’re okay, these patients are seeing psychologists’," Bluhm says. "Well guess what? Psychologists can only use the tools that they have; the regular stuff. And this isn’t regular."
But back home in Vermont, where she lives in an expansive barn that’s been converted into cozy apartments, Tarleton has thus far bucked any concerns about a face transplant patient’s potential struggles. In fact, she’s created a regular kind of life.
She’ll likely remain legally blind, but she is reveling in the new abilities her face can offer. She has the same boyfriend, with whom she shared a belated Valentine’s Day dinner mere weeks after the surgery. She has found freedom in forgiving her ex-husband, and empowerment in sharing her story through public speaking and a book, Overcome: Burned, Blinded, and Blessed. And she has found lifelong friendship in the most unlikely of places: with Marinda Righter, whose mother’s sudden death allowed Tarleton to open a new chapter. "I wanted to respect the family’s rights, and their right to grieve ... but I really wanted to know so much about [Cheryl]," Tarleton says of meeting Righter for the first time in April. "And when I met Marinda, she was so beautiful, and accepting, and peaceful."
The two, who talk regularly on the phone, are something of an unconventional pairing among face transplant cases thus far, as donor families typically opt for anonymity or else remain at a comfortable distance from the patient now wearing their loved one’s skin. But for both Tarleton and Righter, the resurrection of Cheryl’s face has been an unimaginable gift. "It’s quite a beautiful thing to have someone’s exterior body, especially their face," Righter says. "I can’t help but think... I could just go up to Vermont and give my mom’s face a kiss."
Design: James Chae and Scott Kellum
Illustration: Katie Scott
Photographs of Carmen Tarleton in the video by Shell Stein