Why We Spent Years Covering the Story of a Face Transplant

It may be difficult to look at, but this is an important story about the human journey.

This story appears in the September 2018 issue of National Geographic magazine.

Adrea Schneider’s heart went to a woman in her 60s. Her liver went to a 66-year-old man. Her right lung was given to a 51-year-old woman, the left to a woman age 62. Her kidneys and corneas were donated. Her uterus was used for medical research on infertility.

Her face went to Katie Stubblefield.

This is a story about that face—a gift from a young woman who died, to a 21-year-old woman who would become the youngest face transplant recipient in American history.

It is a story about breakthrough science and the doctors, nurses, and surgeons who created a medical miracle. It is a story about perhaps the most distinctive part of our body and the very nature of human identity. It is a story of second chances.

The story starts with two tragedies. The first was Katie’s—an impulsive teenage moment that forever changed her life and that of her family. A suicide attempt with a rifle. A blast that took her nose, mouth, jaws, the front of her face, part of her forehead, and most of her eyesight.

The second tragedy, about three years later, was Sandra Bennington’s: She lost her 31-year-old granddaughter, Adrea, to a drug overdose. Adrea had indicated she wanted to be an organ donor—but it was Sandra who took the extraordinary step of giving her granddaughter’s face to Katie.

Adrea “couldn’t use her face anyway anymore,” Sandra said. “When we go to heaven, we have a new body … It was hard, you know, but I thought, my goodness, here’s this young girl who needs a face. What a wonderful thing that would be. It just seemed like it was meant to be.”

National Geographic spent more than two years documenting Katie’s face transplant, detailing the procedure in a way that has never before been seen. We were given unprecedented access by the Cleveland Clinic in Ohio, where the transplant was performed—and, more important—by Katie and her parents, Alesia and Robb Stubblefield, and Sandra Bennington. They trusted us to accurately and sensitively take tens of millions of readers on a journey that made Katie the 40th person in the world known to have received a face transplant.

Katie and her family allowed this intimate contact, including permission to interview her doctors in depth, because they’re trying to make something positive out of a catastrophe. “I wanted people to know how amazing this procedure is and to know how beautiful life is,” Katie said. “Bottom line, I want to help people.”

Our writer, Joanna Connors, and photographers, Maggie Steber and Lynn Johnson, together spent hundreds of hours with Katie, her parents, and her doctors. They were there for the surgeries leading up to the face transplant. They witnessed Katie crying in pain and documented the ceaseless efforts of Alesia and Robb to bring her comfort. They went with her to medical appointments and hung out at the family’s temporary home at the Ronald McDonald House. They were in the operating rooms for Katie’s 31-hour transplant surgery. They were there when Katie’s family saw her new face for the first time.

“Ever since I first met Katie and her parents, I was so struck by the parents’ resolve that Katie would have a new face and that she would have a life,” Steber said. “I really began to regard them as warriors … warriors for their daughter.”

It would be incomplete for this note not to include a warning. This is a story that some of you may find very difficult to look at. The photographs of Katie before her surgery, especially, are hard to view. The photos of the operation itself may shock some readers. But we’re telling this story because it’s a story that matters.

Katie’s face transplant happened because it was paid for by the U.S. Department of Defense. Insurance companies don’t cover face transplants, which are considered experimental. The military funded this surgery, and funds other kinds of transplants, through the Armed Forces Institute of Regenerative Medicine because it wants to improve treatment for service members who are injured in battle.

Countless advances in medicine have come about in response to wartime injuries and illness. As Connors notes in her story: “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.”

The story also is important because it highlights the scientific advances doctors have made. Much of the work that led to Katie’s ability now to breathe through her nose, eat, and speak began at the Cleveland Clinic in 1995, in surgeon and scientist Maria Siemionow’s laboratory. While many in medicine scoffed, Siemionow did the basic research, performed the first face transplants on rats, in 2003, and did the first human face transplant in the United States, in 2008.

As you’ll see in this story, Katie’s journey has been remarkable and arduous. It isn’t over yet: She has more surgeries to come. She’ll have a lifelong reliance on powerful drugs. But she’ll be able to go out in public and share an important, hard-learned message with young people who feel they cannot go on. “Anything going on in your life, you can get through it,” Katie says. “Life is a beautiful gift.”

And for Sandra Bennington and Adrea Schneider, Katie has this poignant message: “Thank you for being so loving and giving and caring. You gave me back life. I will always love you and be thankful for this beautiful gift.”

***

Thank you for reading National Geographic.

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