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Time: 2018-08-15 19:26:47 UTC

Original URL: https://www.nationalgeographic.com/magazine/2018/09/face-transplant-katie-stubblefield-story-identity-surgery-science/ [nationalgeographic.com] using ISO-8859-1 encoding.

Title: Katie's New Face

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Katie's New Face

Arthur T Knackerbracket has found the following story [nationalgeographic.com]:

The face lies on a surgical tray, eyes empty and unseeing, mouth agape, as if exclaiming, “Oh!”

Sixteen hours ago surgeons in Operating Room 19 at the Cleveland Clinic [clevelandclinic.org] began the delicate work of removing the face from a 31-year-old woman who was declared legally and medically dead three days earlier. Soon they will take it to a 21-year-old woman who has waited more than three years for a new face.

For a moment, the face rests in its astonished solitude.

Surgeons, residents, and nurses, suddenly silent, gaze at it in awe as clinic staff, like unusually polite paparazzi, move in with cameras to document it. The face, deprived of blood, grows pale. With each second of detachment, it looks more like a 19th-century death mask.

Frank Papay, a veteran plastic surgeon, picks up the tray, carrying it carefully in his gloved hands, and walks to Operating Room 20, where Katie Stubblefield waits.

Katie will be the youngest person to receive a face transplant in the United States. Her transplant, the clinic’s third and the 40th known in the world, will be one of the most extensive, making her a lifelong subject in the study of this still experimental surgery [soylentnews.org].

Looking down at the face he carries, Papay feels a kind of reverence. It’s an amazing thing, he thinks, what some people will do for others—to give them a heart or a liver, even a face. He says a silent prayer of thanks and takes the face to its next life.

As we scrutinize our own faces for wrinkles and flaws, we can fail to notice what a marvelous organ the face is. Our faces are the most distinctive part of our visible body, a mysterious mosaic of the physical and the psychical. Faces are the body’s workaholics: They confer and confirm identity, express emotion, communicate meaning, perform basic functions necessary for life, and enable us to experience the world through our senses.

We are born seeking faces. Newborns turn toward them during their first moments out of the womb. Babies observe, respond to, and mimic our expressions as though it’s their job. And in a way, it is. This close study of faces is the way we all begin to understand the curious business of being human. Faces, in evolutionary terms, helped us become social animals.

Take a moment to look in a mirror. What do you see? Most of us would answer, “Myself.”

My. Self. Our faces are the outer image we attach to our inner sense of self, to who we are and where we fit in the world. Faces root us in our culture, in the rituals and rules about how we present ourselves and how we see others. In some cultures, faces are veiled and hidden. Other cultures draw attention to faces with displays of tattoos, piercings, and scarification. In the contemporary world, faces are often a blank canvas to be manipulated with cosmetic surgery, injections, and intricate makeup techniques learned on YouTube. If we allow them to age, our faces will tell our life story. They connect us to the past in our ancestors and to the future in our children.

At the simplest level of identity, our faces function as our passport photo to the rest of the world. But they’re also the way others seek to know us more deeply, to discover who we are behind that photo. “Appearance is the most public part of the self. It is our sacrament, the visible self that the world assumes to be a mirror of the invisible, inner self,” wrote Harvard Medical School psychologist Nancy Etcoff in her book Survival of the Prettiest [amazon.com].

Whether the emotions we express with our faces are evolutionary adaptations or learned social behaviors is a topic hotly debated among social scientists. Charles Darwin argued in 1872 that facial expressions displaying some emotions are universal adaptations. In the late 1960s the psychologist Paul Ekman concluded that Darwin was correct. Human beings, across cultures, recognize specific facial displays associated with basic emotions: anger, disgust, fear, joy, sadness, and surprise.

Look in the mirror again. Think about what you can do with that face. You can kiss the ones you love, bite into an apple, sing, and sigh. You can smell freshly cut grass. You can gaze at your newborn and touch your cheek to his. Beyond showing (or not showing) our emotions, faces enhance our ability to communicate with language. We smile, we wrinkle our noses, we wink, we grimace, we perform countless expressions as we converse, often without even realizing it.

Now visualize what goes on beneath that astonishing face. We have 43 mimetic muscles to express emotion and articulate speech. We have four major muscles on each side of the face that move the jaws and complex lingual muscles that assist in swallowing and speech. The face is also made up of layers of blood vessels, sensory and motor nerves, cartilage, bone, and fat. Cranial nerves control the motor muscles and transmit sensory information to the brain, enabling us to see, smell, taste, hear, and feel sensation on the skin.

Go back to the mirror one more time. Look at your incredible face.

Imagine what it would mean to lose it.

This photographic evidence didn’t persuade Katie. “I never thought of myself as beautiful,” she told me one day, a few months after we met. Her mother, Alesia, wasn’t surprised to hear it. Katie was a perfectionist, she said: “Katie has a big heart for other people, but she was always so hard on herself.” When I looked at the photos again, I saw a hint of fragility in her face, a glimmer of the cost of being perfect.

Katie was an irrepressible little girl, her older sister, Olivia McCay, told me. “She was fearless, very fearless, and a lot of fun.” She developed a quick, sarcastic sense of humor, a trait she shared with her brother, Robert. But as she grew older, Olivia noticed, Katie put enormous pressure on herself to achieve. “She wanted to be the best in all of these sports that she’d never even tried before,” Olivia said. “She wanted to be the best academically. She studied for hours, all the time.”

When Katie was in high school, the family made two major moves. Her sophomore year they moved from Lakeland, Florida, where she grew up, to Owensboro, Kentucky. She’d just settled in when they moved again, a year later, to Oxford, Mississippi. Her father, Robb, who’d been a minister and educator, and Alesia took jobs teaching at a small Christian school. Katie enrolled as a junior and fell in love with a classmate. They started talking about marriage. “This one was just so serious for so young,” Olivia said. “She just grew up so fast that year.” After the moves, she said, “I think she was ready to have some stability and some consistency.”

She didn’t get them. In her senior year Katie’s world unraveled. She was already contending with chronic gastrointestinal troubles and surgery. She’d had her appendix taken out the year before, and complications led to the removal of her gallbladder in January of her senior year. Two months later, the Stubblefields told me, the school’s headmaster informed them that he would not renew their contracts and then abruptly fired Alesia. Katie, who had trusted the headmaster, felt betrayed.

Then, on March 25, 2014, Katie picked up her boyfriend’s phone and found texts to another girl. When she confronted him, her family told me, he broke up with her.

Hurt and angry, Katie went to Robert’s place in Oxford, where she furiously texted and paced, back and forth. Robert called their mother. While the two were outside talking about how upset Katie was, she went into the bathroom, put the barrel of Robert’s .308-caliber hunting rifle below her chin, and pulled the trigger. When Robert kicked in the locked door, he found his little sister covered in blood. “And her face is gone,” he recalled, still shaken by the memory.

This is how Katie arrived more than five weeks later at the clinic, which was founded in Cleveland, Ohio, in 1921 by four doctors, three of whom had served together during World War I and had come home inspired by the military model of teamwork among specialists. In Memphis, Tennessee, where Katie was first operated on, doctors had saved her life against all odds, but their attempt to cover the gaping wound with a tissue graft from her abdomen hadn’t worked.

Brian Gastman, the first clinic doctor to see Katie, lifted her onto a gurney and wondered if she would make it. She was so tiny. Just 105 pounds. Even if she survived, he wasn’t sure she would have enough tissue for all the reconstructive work he needed to do. “It was not great,” he said. “Her brain was basically exposed, and I mean, we’re talking seizures and infections and all kinds of problems. Forget the face transplant; we’re talking about just being alive.”

In his 27 years of training and practice, Gastman said, this was one of the worst face traumas he’d ever encountered. Beyond the wound to her face, she had traumatic brain injury from the bullet’s concussive force to her frontal lobe, optic nerve, and pituitary gland. The damage to her pituitary threw her hormones and sodium levels out of whack, which can be deadly. Taking charge of Katie’s care, Gastman organized a multidisciplinary team of 15 specialists to address all her issues, from endocrinology to psychiatry.

Gastman, who is 48, gives the impression that he’s always late, claiming that he has an attention deficit disorder personality. If he weren’t joking, it would make sense, considering his many roles. He specializes in head, neck, skin, and high-risk soft-tissue cancers. As a plastic surgeon, he removes tumors and does follow-up reconstructions. He also co-directs the melanoma and high-risk skin cancer program and runs his own research lab.

Robb, Alesia, and Katie often say that Gastman loves Katie like a daughter. I asked him about that. The question made him uncomfortable, and he paused a moment before answering. “I’m not a touchy-feely–type person to begin with, whether it be my own family members or Katie,” he said carefully. “But I feel very responsible to her. This is my life mission. With someone like her, who’s so young, it’s the pinnacle. This is what my training should be for.”

“Katie loves Dr. Gastman,” Alesia said, “but she has an old-man crush on Dr. Papay.” Papay, who is 64, chairs the clinic’s Dermatology and Plastic Surgery Institute. He acts as the suave counterpoint to Gastman, with his silvery gray hair and bon vivant manner. His years of work with face transplants also make him the voice of experience and wisdom on the clinic’s face transplant team.

Papay studied biomedical engineering before going to medical school; his training taught him to “work from failure,” anticipating potential problems and devising solutions. Papay told me he gravitated to plastic surgery because it’s about function as much as form. “Everyone thinks that we’re the cosmetic guys, the hairdressers of surgery, and we do face-lifts and breast augmentations,” he said. “But in plastic surgery and now face transplants we’re innovators—we’re fix-it guys.”

Over the course of many surgeries, Gastman and a team of specialists stabilized Katie and patched her face. They removed and repaired shattered bones. To create a nasal passage and protect her brain, Gastman made a rudimentary nose and upper lip from her thigh tissue rolled up inside out. For a chin and lower lip, he used a piece of her Achilles tendon. The doctors fashioned a new lower jawbone from titanium and a piece of her fibula with flesh still attached, using as a guide a 3D model made from a scan of Olivia’s jaw. To move Katie’s eyes closer together, they attached to her skull a distraction device, adjusting it day by day. It was challenging work, and Gastman was proud of it.

Katie had never seen this face, but she had come to know it by touch—the crooked tube of flesh in the center, the bulbous chin. She knew her eyes looked as though someone had grabbed her by the cheeks and jerked up on one side and down on the other.

She called this face, the second of her young life, Shrek.

The Stubblefields never returned to Oxford. Robb and Alesia moved to the Ronald McDonald House near the clinic, into a room about the size of a studio apartment with a makeshift kitchen. Katie qualified for Medicaid, and the clinic paid for much of her care with federal funding to study face transplants. For daily living, the Stubblefields subsisted on the kindness of others—family and friends gave them money, held fund-raisers, and started online campaigns. Robb picked up odd jobs, painting houses or working security.

Katie became their full-time job. Whenever she was in the hospital, one of them was nearly always with her, day and night. When she wasn’t in the hospital, their days were filled with doctor’s appointments, rehab sessions, and the search, always, for something new that could help her. Acupuncture. Massage. A chiropractor. A personal trainer. A nutritionist. Music therapy. Spiritual and healing services. They googled for information, posted updates for friends on a Facebook page, and used a dry-erase calendar to track their schedule.

Two years after Katie arrived at the clinic, I met her and her parents in the waiting area of the plastic surgery department, a large, sunny room that marks one of the many odd crossroads of modern American medicine. Here, patients suffering significant facial disfigurement and scarring wait for their appointments alongside buffed and gleaming clients who come in for Botox injections and face-lift consultations.

Katie arrived in a wheelchair pushed by her father. She wore a surgical mask over the lower half of her face and a brightly colored head scarf. She looked small and vulnerable, though I soon learned she wasn’t. She took my hand and said a cheerful hello, and as we chatted, I saw that in this space, at least, she seemed entirely comfortable. Maybe that’s because she didn’t stand out. In one way or another, everyone there was dissatisfied with his or her face.

When I visited the family at the Big Mac House, as Robb calls it, Katie was almost always in a recliner, tilted back and covered in fleece blankets. Alesia tended to her nonstop, dispensing medications, bringing her water in a child’s sippy cup, rubbing her hands and feet with scented lotions, and heating slippers and eye masks in the microwave.

Katie usually listened passively to the conversation but sometimes interjected a comment or a joke, giving me a glimpse of the funny Katie her family frequently described.

One day we were talking about religion, which is central to their lives. What happened to Katie shook their faith a bit but didn’t kill it. It also didn’t kill their marriage—a common repercussion when a child dies or has overwhelming medical problems. Where Alesia is emotional, Robb tends toward intellectual discourse. He has a bushy beard that enhances his sagelike manner, and when Alesia is fired up, he gazes at her with a tender smile.

That day Alesia was telling me about her extremely conservative Christian upbringing. Her church didn’t allow drinking, and in middle age Alesia discovered she loves wine and a good cocktail. “Can you believe it?” she said. “I didn’t have my first drink until I was 43!”

Katie perked up. “I had my first drink when I was 14,” she said.

This was news to Alesia and Robb, who laughed in the way of parents who figure, What can you do? “Oh, Katie,” Alesia said fondly.

Sandra Bennington, the grandmother of the donor, explains her decision.

One evening Alesia told me their situation still felt unreal. She had never worried about Katie getting into trouble. Katie was sensitive and had a melancholy streak, yes, but she also had a snarky sense of humor. The night before she shot herself, she’d jokingly refused to clean up after dinner, picking up a lamb puppet and saying in a cartoonish voice, “This is ba-a-a-a-a-d.”

What clues had she missed? Alesia often descended into spirals of guilt and grief, feeling that she’d failed her daughter. She clung to one thing that Kathy Coffman, a clinic psychiatrist, had told her. The suicide attempt—Alesia almost always called it “the accident”—was an impulsive act. Five minutes later, or five minutes earlier, and Katie might not have grabbed the rifle.

“It was one moment,” Alesia told me. “One moment, 20 seconds, changed our lives.”

That grim fate changed in 2005, when French surgeons performed the world’s first partial face transplant. But it was a scientist at the Cleveland Clinic who pioneered the procedure by conducting years of research to demonstrate that faces, like hearts and hands, could be transplanted.

At the clinic there’s a saying: Face transplants have many fathers but only one mother. The clinic’s effort was led by Maria Siemionow, an elegant and reserved doctor who was born and trained in Poland. Siemionow, who came to the clinic in 1995, was the first in the world to win official institutional approval to do the groundbreaking surgery on human subjects in 2004. Four years later, a team of surgeons at the clinic, including Siemionow, completed the first face transplant in the United States.

The doctors consult with Katie’s parents.

Now at the University of Illinois at Chicago, Siemionow told me she first thought about transplanting a face in 1985, during a charity mission to Mexico. She’d operated on some children there who were so badly burned that their fingers had fused.

“Subconsciously, I started thinking, if we can do something for their hands, what about their burned faces?” she told me.

Doctors had been transplanting internal organs since the first successful kidney transplant in 1954. The end of the 20th century brought vascularized composite allotransplantation—the term for transplantation of faces, hands, and other parts of the body that are not solid organs. But the notion that faces could be transplanted remained, for many, far-fetched.

Most in the medical world scoffed, Gastman told me, but Siemionow carried on, conducting hundreds of experiments. She tested surgical techniques and suture patterns in anastomosis—the joining of two vessels or nerves—and developed novel immunosuppressive strategies to prevent rejection of the complex variety of tissues that make up the face. She was the first to report successfully transplanting an animal face when she attached a new face to a rat. The rats were startling to look at, with patchwork faces of light and dark fur. Siemionow named one white rat Zorro, for its masklike appearance after she’d transplanted a brown face onto it.

“Even my friends were saying, ‘Maria, you’re wasting your time,’” Siemionow told me.

As Siemionow was doing her research, the idea of face transplants was beginning to gain acceptance. The British medical journal the Lancet published an article in 2002 titled “Face Transplantation—Fantasy or the Future? [thelancet.com]” “The concept may be shocking,” the authors wrote. Nevertheless, face transplants were likely the future, they declared, and conceivably could also become a duty for surgeons treating severely disfigured patients.

Ethicists weighed in, many arguing that face transplants, like hand transplants, were not lifesaving and would expose patients to too many severe risks just to make their lives easier.

The proposition of transplanting visible parts of the body also carried with it a huge “yuck factor”—a term bioethicists actually use to describe a strong emotional response by the public to biotechnological innovations. After all, no one sees a transplanted heart, even the patient herself. A transplanted face carries with it echoes of the 1997 thriller Face/Off, which has FBI agent John Travolta switching faces with terrorist Nicolas Cage.

Papay followed Siemionow’s research and offered support. As soon as he became chairman of the plastic surgery institute, he told me, “I went to her and I said, ‘Let’s do it.’”

The two tiny corners left of Katie’s lips lifted in the suggestion of a smile. She was finally getting a new face. It had been more than three years since her injury, more than a year since her name had been added to the waiting list kept by the United Network for Organ Sharing, a contractor for the U.S. Department of Health and Human Services.

Gastman told Katie she was doing this not just for herself but also for others like her in the future. “You’re helping make these reconstructions a reality, and they’re only going to get better,” he said. “Every case we learn so much. And with your case we’re going to do a lot better than we did 39 face transplants ago, because we have learned so much.”

Insurance companies, Medicare, and Medicaid don’t pay for face transplants because they’re still considered experimental. But the American Society for Reconstructive Transplantation has paved the way for insurance payments by proposing guidelines for determining medical necessity. The Department of Defense made Katie’s transplant possible through the Armed Forces Institute of Regenerative Medicine (AFIRM), which has also supported hand transplants.

The consortium of military and private institutions, established in 2008, had a $300 million budget, with $125 million from the military and the rest from other sources. It put transplants and other innovative research into regenerating tissue and bone, as well as new immunosuppressive therapies, on a fast track. Joachim Kohn, one of the first directors of AFIRM’s research projects, told me that the initiative was launched after the Second Battle of Fallujah, the bloodiest conflict of the Iraq War. “Hundreds of severely burned and crippled service members came back to America,” he said. A paper published in 2015 reported that 4,000 service members in the wars in Iraq and Afghanistan sustained injuries to their faces, about 50 considered catastrophic.

The Cleveland Clinic has received $4.8 million, with $2 million earmarked for face transplantation research. So far, no service members have had face transplants, though Siemionow said she’s interviewed candidates. She told me they decided not to go through with it. “They are very tough people,” she said. “They consider the wounds as an honor. They want to be deployed.” A face transplant, with its requirement of lifelong immunosuppression, would prohibit that.

At 21, with a face severely wounded by ballistic trauma, Katie was the closest the Pentagon might ever come to a stand-in for its wounded warriors. But before Katie could become a voluntary human research subject, Gastman, Papay, and others at the clinic spent many hours explaining to the Stubblefields what a new face would mean for Katie. The family hadn’t heard of face transplants until a doctor in Memphis told them about the clinic’s work.

Restoring function—the ability to eat, to speak, to breathe through the nose, to blink—is far more important than looks, Papay told me. That gave me an opening to bring up an awkward subject. Many face transplant patients don’t look all that good. Their faces look a bit frozen, masklike, and slightly off-kilter.

“Am I being mean or too critical?” I asked.

“No. I think you’re being honest. I think you’re right,” he said. “They will never look like they did, OK? And so they look presentable in public, but do they look like they did before? No. They look better than their disfigurement, but to what degree is so variable.”

Managing expectations about how they will look is one of the biggest challenges for the team, Papay said. “You have to be extremely honest, to a fault, and extremely realistic and extremely transparent. And if you’re not, you’re actually doing something that to me is terrible.”

Coffman, the psychiatrist, who has worked with all three of the face transplant patients at the clinic, helps screen candidates for the procedure, making sure they’re stable psychologically, they understand all the risks and unknowns, they can be trusted to stick to the medication regimen, and they can truly give informed consent. Coffman has a tranquil therapeutic manner and is especially protective of Katie, visiting her daily whenever she’s in the hospital.

A suicide attempt complicates the matter, Coffman said, telling me about one of the earliest transplant patients, a man who’d shot himself in the face. The transplant, performed by a team in Paris headed by Laurent Lantieri, was successful. The man looked good. But about three years after the surgery, he killed himself. “It was quite devastating for the whole team,” Coffman said. “Dr. Lantieri has voiced the opinion in conferences that he would not do another face transplant on somebody that was suicidal as a cause.”

That brought us to Katie. “That puts a huge burden on you to discern whether Katie will try this again, doesn’t it?” I asked Coffman. “Yes,” she answered. But she pointed out that Katie acted on impulse and hadn’t given any indication she was thinking about suicide before that day. “I think that she has been very stable,” she told me. “She’s been on medication. She’s never voiced any suicidal thoughts since that time. She’s generally a very upbeat person.”

As part of the protocol for Katie’s informed consent, Coffman and others had outlined the risks. One of the biggest is the potential for rejection. Faces are riskier than solid-organ transplants since they involve many kinds of tissue, including muscles, nerves, blood vessels, bones, and skin. Katie would have to make a lifelong commitment to taking powerful immunosuppressive drugs, which would also add to the risks, making her far more vulnerable to infections and diseases, especially lymphomas, other cancers, and diabetes.

In 2016 at a conference in Paris, Coffman heard a member of a prominent face transplant team call for a moratorium. Patients were having more difficulty with antirejection medication than expected and were requiring more follow-up surgery. The mortality rate was worrisome as well: Out of 36 transplants at the time, six patients had died. When Coffman returned, she suggested that Katie might want to wait five years. “She was pretty adamant that she knows the risks, she understands the mortality,” Coffman said, but also noted her youth. “It’s that golden age when you don’t always think that mortality will affect you.”

Over and over again, Coffman and others explained to Katie and her parents that the surgery was experimental and, because she didn’t need the operation to live, it was elective surgery. But Katie didn’t consider it elective.

The donor was wheeled into OR-19 about 10 minutes later and transferred to an operating table. A ventilator delivered oxygen through a face mask to keep her organs viable. She had smooth, tawny skin, a cute nose, and dark hair. A staff member from the organ procurement organization for northeast Ohio, Lifebanc, told the group that after the donor’s face was removed, surgeons from the clinic and other hospitals were waiting to recover her liver, kidneys, lungs, heart, and, for research, uterus.

The face surgeons go first. But since organs are precious and face transplants are not lifesaving, if the donor’s condition started to decline, the team would have to abandon its work to allow other surgeons to collect the donated organs.

At 8:17 a.m., Gastman made the first cut, an incision in the donor’s neck to insert a tracheostomy tube for oxygen. With the face mask removed, nurses prepped and cleaned the donor’s face and shaved her hairline. Gastman drew lines down the sides of her face and from ear to ear to guide the doctors’ scalpels. For the next 16 hours, three to four surgeons, all wearing surgical loupes—glasses fitted with magnifying scopes—would bend over the donor like jewelers examining a precious gem. Around them, residents watched each move, transfixed, some standing on stools to get a better view.

First the surgeons removed her eyes for cornea recovery. Then they began the long work of isolating and delicately dissecting cranial nerve VII. The facial nerve emerges on each side of the face from the brain stem, travels to the front of the ear, and then divides into five branches, which lead to the scalp and forehead, eyelids, cheeks, lips, and neck. It has both motor fibers, controlling the muscles of facial expression, and sensory fibers, providing a sense of taste to the tongue and serving glands that allow us to salivate and cry.

Next they turned to what Papay called the bony cuts. He cut the entire upper jaw and part of the lower one to transfer to Katie, most of the cheekbones, part of the frontal bone that overlies the sinuses, and the orbital floors and lacrimal bones near the eye sockets. Where the bone was visible, he employed a variety of saws, including one that uses high-frequency ultrasound. Where the bone was not exposed, he used an osteotome, which resembles a chisel. “I call it the blunt work,” Papay said. “It’s manual labor, not as aesthetic.”

Finally they turned to the blood vessels, which are done last to limit the time the face is without a blood supply. They dissected veins and arteries, tagging them with different lengths of suture to match them to Katie’s vessels.

Nearly four hours after they’d started on the donor, when they were sure she was stable and they wouldn’t have to abandon the surgery, they were ready to begin on Katie. At noon, doctors wheeled her into the adjoining OR-20. “Katie, we’re going to take amazing care of you,” Gastman told her. “And the goal is, you’ll wake up and say, ‘When are we going to start?’ ”

After the anesthesia put Katie to sleep, Gastman drew lines on her face to mark the cuts and then made the first incision, also a tracheostomy. Then he and two other surgeons began dismantling most of the reconstructive work Gastman had done on Katie in the previous two years. Residents crowded around this surgical table too. Hours went by. Monitors beeped steadily. The surgeons spoke quietly as they worked. Nurses were in constant motion, handling instruments, checking monitors.

In OR-19, it was 12:11 a.m., the beginning of the next day, when Papay and the team severed the final blood vessel and removed the donor’s face.

Papay, with the face on the tray, walked into OR-20, where doctors placed the face on Katie. Immediately they began to connect it to her blood vessels. When they finished the left side and unclamped Katie’s vessels, her blood rushed in. The face blushed. When they finished the other side and unclamped, the whole face turned perfectly pink. “There was a very large internal sigh of relief by almost all of us surgeons,” Gastman recalled.

They attached the face from the neck up, reversing the steps they’d taken to remove it. They started with the donor’s bones, using osteo-integrated plates and screws to connect them to Katie’s bones. Then they turned to connecting the nerves, a bundle of fibers surrounded by a sheath. The specially trained microsurgeons stitched the ends of the sheaths together with sutures the size of a strand of hair, trying not to damage the very, very fine fibers inside. “Then the nerves will connect, kind of kiss each other,” Papay explained.

They sutured only the motor nerves, leaving the sensory nerves to connect on their own. During their first face transplant, they didn’t connect the fifth cranial nerve, the main sensory nerve of the face and head. Yet the patient regained a great deal of her sensory function. It surprised and puzzled them. “We absolutely do not know how that happens,” Papay told me. In the midst of such medical precision, there’s still room for wonder.

Through months of discussions and practice surgeries in the clinic’s cadaver lab, the team had decided to do only a partial face transplant. They would fix just the cavernous, triangle-shaped wound, giving Katie a new nose, mouth, set of teeth, and chin, as well as the facial bone below her eye sockets and most of both jaws.

They had decided not to touch her cheeks, most of her forehead, her eyebrows and eyelids, or the sides of her face. They wanted to keep as much of Katie’s face as possible, to preserve the features “that make her still look like Katie,” as Gastman put it, and to reduce the risk of rejection, by limiting the amount of transplanted skin—the most antigenic part of the body.

But when they laid the donor’s face on Katie, the surgeons saw that the triangle didn’t fit well. Katie’s head was smaller than the donor’s, and her scar tissue took up space. There wasn’t enough room for all of the donor’s muscles and vessels. The donor’s skin tone was also darker, and that mismatch would make the transplant stand out.

The surgeons conferred, some of them stopping to examine the 3D models that had been made from CT scans of the two heads. A majority thought they should give Katie the donor’s full face. It was clear that it would look a lot better.

A few on the team argued that more tissue and skin might mean she would have to take higher doses of the strong antirejection drugs she’d be on for the rest of her life. Worse, in the case of a rejection so acute that her face had to be removed, she wouldn’t have enough tissue on her body for reconstructive surgery.

Gastman and Papay explained the options to Robb and Alesia during that first visit and several more as morning turned into afternoon and the surgery continued. They showed the parents photos they’d taken with their own phones of the full face laid over Katie’s face. They didn’t tell them that Gastman wanted to do the full face because Katie was a young woman who cared about her appearance, while Papay wanted to use as little donor skin as possible to minimize the risks and maintain the function she had left.

At their fourth meeting, as the doctors went through the pros and cons of each choice, Alesia grew tense. She shifted in her seat constantly, twisting her arms and fingers, crossing and uncrossing her legs. She’s a petite woman but feisty, and though her exhaustion and distress are etched on her face, you can see her natural beauty—one her two daughters had inherited.

“Every decision you’re going to make now is going to be right,” Gastman told Katie’s parents. “But you’re always going to have a what-if in your mind. So I think the best is just, ‘What does your heart really say?’ maybe is a better way of asking, ‘What do you think she wants? What would she be happier with?’ ”

After a long pause, Robb murmured, “I think she would want the full, the full-on.” Alesia looked surprised, then as if she might cry.

Katie meets her donor's grandmother.

She twisted up even more. She wanted to blurt out, “No, no, no. This is your field. You should make the decision. Of course I don’t want Katie to die or be more likely to die. But she wants to fit in this world; she wants to be able to go out and be part of it.”

Gastman and Papay said they’d give them half an hour more. As they started to leave, Alesia pointed at Gastman and said, “What do you think, gut feeling?”

“Like I said, I think you could be right either way you go,” Gastman replied evenly.

“Could I be wrong either way I go?” she asked.

When the doctors left them alone, Robb and Alesia imagined what Katie would say if she woke up to the partial transplant, with its more visible scarring and mismatched skin tone. “She’d say, You mean I could have looked better than this, and you decided not to do it?” Robb said. Alesia thought about what Katie had told her: “I want to go out and be a face in the crowd that no one looks at.”

They had their answer.

At 3 p.m., 31 hours after surgery on the donor started, the surgeons finished suturing the top layer of skin, attaching the entire face. The nurses, residents, staff, and doctors applauded.

The face, now Katie’s, had lost its astonishment. It looked serene.

Gastman went to tell the family the surgery was a success. He told them he was going to go home, take a shower, kiss his daughters, and cry.

When Katie’s parents and brother came in to see her in the intensive care unit, they stood silently by the side of her bed, staring at her new face. Robb, having seen Gastman’s photos, was not shocked. Robert remarked that his little sister had a new feature, a slight dimple in her chin. “Like Kirk Douglas,” his dad said. Alesia stroked Katie’s arm and thought, “You had one face up to 18. You had another face from 18 to 21. Now you have this face.” She tried to see Katie in it, but she could not. She longed to see her daughter.

“What if Katie comes out a different personality?” she asked Robb. “I don’t want that. I love who Katie is on the inside.” 
“Alesia,” Robb said, “we’re not watching some sci-fi movie.”

If it felt like a sci-fi movie at times, that was understandable. In her crowded room in the intensive care unit, hooked up to a ventilator, an IV tube, and an array of beeping monitors, Katie looked like the experimental subject that she, in fact, was. There was also something regal in her sedated repose, an impression highlighted by the tiara of jagged sutures etched across her bald head and the nurses, residents, and doctors who attended her like somber courtiers.

About two weeks after the doctors wheeled Katie out of the OR, a physical therapist had her out of bed and walking the hallways, their stately procession headed up by a pole festooned with bags of medications. Even though she was moving, Katie felt as if she were asleep for most of May, or in a movie, vaguely aware of people coming and going but never completely alert.

The first time she was aware of touching her new face, it felt very swollen and round. Papay had told her she’d gotten a cute nose and that it looked like her mom’s. She asked her mother if the new face was good enough that people would stop looking at her as if she were a freak.

The days in the hospital, as always, grew long. Katie had bad days and worse days, the pain sometimes unbearable. Hooked to a feeding tube, she moaned and sometimes cried that she was hungry. She couldn’t speak at all, so Alesia got her a whiteboard and marker. She scrawled: “mashed potatoes.” “Love you.” “It hurts.” Either Robb or Alesia, often both, stayed with her.

Chronic rejection will always be a risk for Katie, but she had no early, acute rejection episodes during her nearly three months in the hospital. She had three more major operations to undergo in the coming year and a half. First doctors would clean out her sinuses and insert titanium-mesh implants under her eyes to lift them up in the sockets and bring them forward. Second they would remove some of the extra skin and tissue left in place in case of rejection, which Gastman likened to a face-lift. Finally a third surgery would shorten her lower jaw, move her tongue forward, and place an implant in the roof of her mouth, which doctors hope will help Katie speak more clearly.

“All those photos you’ve seen of people who’ve had face transplants and look so good, remember, those photos were taken after all of these revision surgeries,” Gastman explained on one of his frequent visits. “It takes time.”

“Dr. Gastman,” Katie said, “when you do the face-lift, I want a boob job too.”

Alesia, laughing, leaned in and whispered to Katie.

“Oh, I made you blush, Dr. Gastman!” Katie said.

He blushed deeper.

We tend to think of healing as a passive activity, one that occurs while lying in bed binge-watching terrible television shows and waiting for your immune system to work its stealthy magic. With her discharge from the hospital on August 1, 2017, though, rest was over for Katie. “For the foreseeable future, you’re a professional patient,” Gastman told her the day before she left the hospital.

They all felt they were being set free when Katie returned to the Big Mac House. But they weren’t free. Alesia and Robb would now be Katie’s nursing staff, a round-the-clock job. They took home a 2½-page printed list of daily medications. The pharmacist who went over the list pointed two times to Prograf, the immunosuppressant. “The most important medication,” she said. The giant calendar on the wall filled with appointments. Physical therapy twice a week. Work with a personal trainer twice a week. Occupational therapy once or twice a week. Braille lessons two or three times a week. Speech therapy four times a week.

Speech proved especially difficult. Katie’s mouth was mostly the donor’s mouth. Only Katie’s tongue and upper, soft palate remained, and they weren’t functioning properly. Her tongue didn’t touch her teeth. As hard as it was to understand Katie before the surgery, afterward it was almost impossible. Alesia and Robb interpreted for her, but even they sometimes guessed. The problem with her palate gave her voice a strong nasal timbre. When Katie heard a recording, she said, “I sound like a frog.”

Almost 100 percent of her native facial musculature was gone, replaced by the donor’s, and she had to exercise those muscles without being able to feel them moving. Her nerves, which Gastman said would grow at about an inch a month and eventually provide sensation and motor control, would take at least a year to regenerate. Something as simple and automatic as keeping her mouth closed when she wasn’t talking or eating didn’t happen naturally; others had to remind her, and then she had to push up under her chin with a finger. Smiling or puckering her lips took major effort without much result.

Even as Katie learned Braille and got training at the Cleveland Sight Center, the Stubblefields refused to give up hope that she would see again. They pointed to research at the University of Pittsburgh Medical Center, where a team funded by the Defense Department hopes to perform whole-eye transplants within 10 years. The Stubblefields were excited by one prediction the head of the research team made: Patients with face transplants will likely be the first eye recipients.

She was the third donor found in the time Katie waited for a face. Twice a donor had been identified and the clinic had alerted the Stubblefields. Twice the donors hadn’t worked out. For patients waiting for an internal organ, the only match requirements are compatible size, blood type, and, for some organs, tissue type. With faces, the sex must match, the skin tone must be similar, and the age must be reasonably close. That, along with the need to find a donor fairly nearby, means the pool is much smaller. Katie’s youth made it even smaller.

More than 120,000 people in the U.S. await organs of all kinds, but they’re in short supply. On average, 20 patients die each day while waiting. Faces were added to the list of organs in the national transplant system in 2014; the wait is unpredictable. The pool of candidates is very small, and the family of the potential donor must give permission to use the face, even if the person had registered as an organ donor.

Katie’s doctors had said it was likely the donor would be someone who died from a drug overdose, given the opioid epidemic that has hit Ohio particularly hard. Nationwide, the epidemic has led to an increase in the number of available organs: A recent study found that the number of donors who died from drug overdoses jumped more than tenfold from 2000 to 2016. As it turned out, Katie’s donor did die of an overdose, but opioids didn’t kill her; cocaine did.

Lifebanc, the organ procurement organization for the region, keeps information about donors and recipients confidential, even from one another. If one side writes a letter to make contact with the other, Lifebanc will deliver it. The other side can choose whether to respond. Once they establish a connection, both must agree to meet.

Through their letters, the Stubblefields learned that Katie had the face of Adrea Schneider and that her grandmother, Sandra Bennington, was eager to meet them. On a Sunday morning in January, Katie and her parents met Sandra for the first time. Sandra was nervous, which she told herself was silly. She arrived, pulling the tank of oxygen she needs for her pulmonary disease, and walked slowly into the living room where Katie waited alone on the sofa. Katie felt nervous too. She had put on a new dress and wore stylish sunglasses covering her eyes, which still looked damaged.

Sandra had already seen a photo of Katie, taken at the moment she was wheeled out of the transplant surgery, when she looked a lot more like Adrea. The photo triggered something in Sandra. Thinking about Katie and her recovery helped her get over her grief.

Face transplant recipients undergo a metamorphosis as they heal and the face adapts to their facial structure. The new face becomes a matrix, as Papay put it, not one or the other but a composite. Katie no longer looked like Adrea.

Organ Donation

Ultimate Gifts

Adrea Schneider’s organs and tissues have helped at least seven people. From halting infections to curing blindness, a single donor can save or improve more than 70 lives. Enroll to donate organs, eyes, and tissues at RegisterMe.org [registerme.org] and marrow at BeTheMatch.org [bethematch.org]. To donate a kidney or part of a liver or other organ while alive, contact a transplant center.

1

7

2

8

3

9

4

10

5

6

11

Organs

Transplants can help the afflicted return to

normal life. Organs that pump blood, filter

waste, and perform other crucial functions can

be replaced when they’re diseased.

First U.S. transplant

1981

1

Lung*

2,478

1,518

Transplants in 2017

Wait list (June 2018)

1954

1968

1967

3

4

Kidney*

2

Heart

Liver*

20,639

96,670

3,273

4,047

8,082

13,910

1987

1968

6

5

Small intestine

Pancreas*

109

249

1,002

2,524

*Living people can donate these full or partial

organs and tissues .

Tissues

Some tissues, such as heart valves, can be

stored for up to 10 years. Composite tissues

must be transplanted quickly. Lack of oxygen

renders them unusable.

7

Cornea

Eye layer is easily transplanted and

can cure blindness.

8

Heart valve

Can save the lives of children born

with heart defects.

Bone

9

Used to save limbs damaged by trauma

or disease.

10

Bone marrow*

Closely matched blood stem cells

can cure cancer patients.

11

Composite tissues

Advances in immunosuppressive drugs

and microsurgery have made more

complex transplants—of hands, faces,

scalps, and sex organs—possible.

The most common organ donor is a

white male, 18 to 34 years old (shown).

NGM STAFF. ART: HAISAM HUSSEIN

SOURCEs: Scientific Registry of Transplant

Recipients; Donate Life America; National Marrow

Donor Program; American Association of Tissue

Banks; OPTN; CDC; UNOS

Organ Donation

Adrea Schneider’s organs and tissues have helped at least seven people.

From halting infections to curing blindness, a single donor can save or

improve more than 70 lives. Enroll to donate organs, eyes, and tissues

at RegisterMe.org [registerme.org] and marrow at BeTheMatch.org [bethematch.org]. To donate a kidney

or part of a liver or other organ while alive, contact a transplant center.

Ultimate

Gifts

Organs

Tissues

Transplants can help the

afflicted return to normal life.

Organs that pump blood, filter

waste, and perform other crucial

functions can be replaced

when they’re diseased.

Some tissues, such as heart

valves, can be stored for up to

10 years. Composite tissues

must be transplanted quickly.

Lack of oxygen renders

them unusable.

First U.S. transplant

1981

Cornea

Lung*

Eye layer is easily

transplanted and can

cure blindness.

2,478

1,518

Transplants in 2017

Wait list (June 2018)

1968

Heart valve

Heart

Can save the lives of

children born with

heart defects.

3,273

4,047

1967

Bone

Liver*

Used to save limbs

damaged by trauma

or disease.

8,082

13,910

1954

Kidney*

Bone marrow*

Closely matched

blood stem cells can

cure cancer patients.

20,639

96,670

1968

Pancreas*

Composite

tissues

1,002

2,524

Advances in immuno-

suppressive drugs and

microsurgery have

made more complex

transplants—of hands,

faces, scalps, and sex

organs—possible.

1987

Small intestine

109

249

*Living people can donate these full

or partial organs and tissues .

The most common organ donor is a

white male, 18 to 34 years old (shown).

NGM STAFF. ART: HAISAM HUSSEIN. SOURCEs: Scientific Registry of Transplant Recipients; Donate Life America; National Marrow Donor Program; American Association of Tissue Banks; OPTN; UNOS

Sandra sat next to Katie and held her hand. “It’s so good to meet you,” she said. “You look beautiful.” Katie said, “Thank you so much for the incredible gift that you gave us.” Sandra leaned in, not quite understanding Katie, and Alesia repeated it for her.

Adrea was a registered organ donor, but when the family support liaison from Lifebanc asked about Adrea’s face, Sandra wasn’t sure what to do at first. “I just suddenly realized that, well, why not a face?” she told Katie and her parents. “Adrea wanted someone to have her other organs. Why not her face too? So that was my answer. I’m very thankful that I did that.”

Robb and Alesia joined them on the sofa, and Sandra told them a little about Adrea. She didn’t tell them about how hard Adrea’s life had been, from the moment she was born, with drugs in her system, to her addicted mother. She didn’t tell them that she’d raised Adrea since she was four years old and adopted her at 11, or that Adrea’s mother had died when she was just 13.

Instead she told them that Adrea loved horses and dogs and children. She told them about Adrea’s son, who was 15 when she died. He did not know about the face transplant, she said. She didn’t know how to tell him that someone else had his mother’s face.

When Sandra saw how protective Alesia and Robb were of Katie, she thought about Adrea, who had her struggles but also was a good person. She thought that if Adrea knew Katie, she would be thrilled she’d helped her. But at the same time—and this always made Sandra cry when she thought it—Adrea would wish she could be Katie, so she could have loving parents and siblings.

Sandra touched Katie’s face. “You look so cute,” she told her. She looked closer. She could see a little of Adrea, in her dimpled chin and her nose, just as Alesia said she could catch a little Katie every now and then when she smiled.

Sandra wanted to tell Katie she could call her Amma, for grandma, just as Adrea had. But she didn’t. She looked at Adrea’s mouth, now Katie’s. She looked at her lips. She saw they were chapped, and she wanted so much to tend to them.

Fourteen months after the transplant, Katie’s doctors had completed the three major revision surgeries. They are also likely to slim her face, reduce scarring, and improve her eyelids.

Papay said he’s pleased with how Katie has adapted so far to her new face, and with the quality of her new skin. “I’m extremely happy that she has not had any rejections,” he told me. “But I’m not happy with her orbits. We’d hoped she’d have better vision. And aesthetically we could do better on how her eyes are positioned.”

Gastman agreed with Papay. “We all like her nose; her lips are pretty,” he told me. “There are things we know are going to get better when we fix them, like the jaw reduction. But some things we can only do so much to improve upon. Her injury may have been the worst injury of any face transplant injury ever. We can’t necessarily make all of her muscles move again. Her tongue is not working well because she lost a lot of tongue muscle and nerves.”

Suicide Prevention

Finding Help

temporary,” Katie says. “And no matter what it is, there’s always someone you can talk to.” In addition to local and state crisis hot lines, the National Suicide Prevention Lifeline offers 24/7, free, confidential assistance at 1-800-273-TALK (8255).

Multiple factors can play a role in a suicide,

including mental health. These are the most

commonly reported.

Relationship

problem

42%

Past or

near-future crisis

29%

Problematic

substance use

28%

Physical health

22%

16%

Financial problem

Watch an interactive [nationalgeographic.com] of Katie talking about life before her injury and how she hopes to use her experience to reach out to other young people.

NGM STAFF

SOURCE: CDC

Suicide Prevention

FindinG Help

After surviving her suicide attempt, Katie Stubblefield hopes to help people who are struggling. For Americans her age, suicide is the second leading cause of death, and the overall rate increased 28 percent from 1999 to 2016. “Whatever is going on in your life, I would say that it’s only temporary,” Katie says. “And no matter what it is, there’s always someone you can talk to.” In addition to local and state crisis hot lines, the National Suicide Prevention Lifeline offers 24/7, free, confidential assistance at 1-800-273-TALK (8255).

Multiple factors can play a role

in a suicide, including mental

health. These are the most

commonly reported.

Relationship

problem

42%

Past or

near-future crisis

29%

Problematic

substance use

28%

Physical health

22%

NGM STAFF

SOURCE: CDC

16%

Financial problem

Katie intends to pick up where she left off, starting with college, online at first, and then maybe a career in counseling. “So many people have helped me; now I want to help other people,” she said. She hopes to speak to teenagers about suicide and the value of life.

For now, she’s focused on her recovery.

“I’m not on the other side,” she said recently to her mother.

“Oh, baby,” Alesia replied. “Your story is not over yet.”

© 1996-2018 National Geographic Society.

-- submitted from IRC

Original Submission