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‘You Have a New Identity.’ Patients Share What It’s Like to Recover From a Face Transplant

6 minute read

After having more than 20 surgeries over four years, Katie Stubblefield finally has a new face.

In May of last year, doctors at the Cleveland Clinic helped the then 21-year-old become the world’s 40th face transplant recipient, and the youngest in U.S. history. Today, Stubblefield, whose story was first told in National Geographic’s September cover story, is recovering well — and adjusting to the novel life, identity and reality that come with her new appearance.

“I’m starting over in a lot of ways,” Stubblefield says through her parents, Robb and Alesia. (Her speech is still recovering after jaw and tongue surgery last month.) “I feel like I’m a toddler again. I’m having to learn everything all over again.”

Dr. Brian Gastman, a plastic surgeon at the Cleveland Clinic who was part of Stubblefield’s care team, says the next chapter of her story will be about embracing this new normal.

“As a face transplant patient, you have a new identity. She’s going to influence people in ways she could never have done before. It’s a different outlook,” Gastman says. “I think she can rebuild; that’s what she’s doing.”

For a while, rebuilding didn’t look like a guarantee. Stubblefield lost a large portion of her face, and nearly her life, after shooting herself in a 2014 suicide attempt. In the aftermath, the then-teenager underwent surgery after surgery — first to save her life, then to try to repair the damage. At first, Gastman says a face transplant was “sort of pie-in-the-sky,” a distant second priority to Stubblefield’s more pressing medical needs. But eventually, as Stubblefield stabilized, the operation began to look possible.

The team knew it would be difficult. Stubblefield’s injuries were extensive. Her youth meant that her immune system was particularly strong, potentially increasing her chances of rejecting a transplant. Her prior suicide attempt raised mental health concerns. And the chances of finding a suitable face donor — who would need to be female and of similar age and complexion — were slim. But after a lengthy evaluation period, which involved “many, many months” of ensuring that Stubblefield understood the risks and demands of the procedure, Gastman and his team pressed forward.

“She was just about to start true womanhood: being able to have children, finding a mate, going to college, getting a job, being a homeowner, all those things. She had not had any of that experience. [Not getting a face transplant] would just freeze her in time,” Gastman says. “As a father myself of a daughter who is her age, I felt really strongly that she was an even better candidate because of the potential of a face transplant and what it can do for a young person.”

In May 2017, after 14 months of waiting and one false start, doctors found a match in Adrea Schneider, a 31-year-old from Ohio who died of a drug overdose, and whose family opted to donate nearly all of her organs. Over the course of a 31-hour operation, Gastman and his Cleveland Clinic colleagues worked to attach Schneider’s face to Stubblefield’s body.

“It’s so important for people to be a donor to help other people out,” Stubblefield says now. “So many people are still waiting for donors; there’s thousands of people that are in need of organs or tissue. People are dying every day because they don’t have a donor.”

Six years ago, thanks to a different donor, Richard Norris got a similar second chance.

Norris, now 43 and living in Louisiana, had a full facial transplant at the University of Maryland Medical Center in 2012, 15 years after a serious gun accident. After the surgery, he says, his outlook and quality of life changed almost immediately.

“For 15 years I walked around having no face, having a surgical mask, living as a recluse. After the transplant, I was able to walk down the sidewalk just like a normal person. That’s a huge change,” Norris says. “The first time I walked outside of the hospital…the first thing I could smell was freshly cut grass. I hadn’t been able to smell for 15 years.”

The relief of that return to normal life, Norris says, was enough to overshadow any difficulties of adjusting to his new appearance.

“I don’t think I really had an identity crisis, because I lived so long disfigured. You go from looking like a very normal person, to one day you wake up and you’re completely disfigured and you don’t look nothing like you did before,” Norris says. “That’s when the identity crisis really starts. Every time I looked in the mirror, I didn’t see myself. After the transplant, I started to see myself.”

Dr. Sheila Jowsey-Gregoire, an associate professor of psychiatry at the Mayo Clinic who has worked with several of the hospital’s face transplant candidates or recipients, says that’s not an uncommon reaction. While patients like Stubblefield and Norris must start over, that’s something they’ve already had to grapple with, Jowsey-Gregoire says.

“Often, these patients have facial trauma, and they’ve already gone through that [adjustment] process once before,” Jowsey-Gregoire says. “That’s kind of an example of how resilient people can be, that they can go through such a traumatic experience and be able to adapt to it and carry on.”

And while adjusting to a new face in the mirror may breed some self-consciousness, Jowsey-Gregoire says building that resilience is often one of the only significant ways transplant patients’ personalities change after the procedure. (Nonetheless, patients go through extensive post-operative counseling to ease the transition, she says.)

“We stay fundamentally who we are, despite whatever happens to the exterior of us. These folks have a core personality that remains the same,” she says. “What differs over time is they often have to build resilience, and they become more resilient in problem-solving and coping and adapting. They still remain the person that they’ve always been.”

In Stubblefield’s case, that’s a person dedicated to helping others, and using her experience for good. As she recovers from her transplant, Stubblefield says she’s looking forward to eventually going to college and getting the training necessary to help others, either through teaching, counseling or raising awareness about suicide prevention.

“Life is precious and life is beautiful. Life is a gift,” Stubblefield says. “No matter what you are walking through, there is someone that you can talk to. There’s always help available when you hit that low point. I’m very thankful to be in a position to share about that.”

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Write to Jamie Ducharme at jamie.ducharme@time.com