Covering “The Story of A Face” for National Geographic Magazine a guest blog post by Maggie Steber

In a perfect world, Katie Stubblefield would not have blown a good part of her face off with a rifle in a suicide attempt at the age of 18. But she did and somehow survived to become the youngest face transplant recipient in US history.

In that one act, Katie lost part of her forehead, her nose and sinuses, her mouth except for the corners of her lips,
and much of her mandible and maxilla, the bones that make up the jaws and front of her face. Her eyes remained but sat askew and badly damaged. She could not walk, talk, or see. Doctors did not expect her to live but somehow, at every turn, Katie proved them wrong even though she had no memory of her suicide attempt. With focused determination, she began to walk again and though it was hard to understand her, she began to talk again. Her vision returned enough so that she could see light and shadows. She was a miracle child. This is a story about the science of face transplants that started out as a tragedy, where a beautiful girl lost her face by her own hand, but ended up being about redemption and the possibility of a new life.

For the past two and a half years, I photographed Katie and her parents, Robb and Alesia Stubblefield as they struggled through numerous surgeries, countless hospital stays, hundreds of visits to various medical specialists and various therapists ranging from physical to psychological for a story for National Geographic Magazine. Titled The Story of a Face by Joanna Connors, it was the cover story in the September 2018 issue of the magazine. The assignment was given to me because the Director of Photography Sarah Leen had seen my intimate nine-year body of work on my scientist mother who lost her memory. Sarah thought I would bring that sensitive intimacy to this story. Photo editors try to match the photographer to the story, not only for their photographic style but also for their ability to visualize a story intimately in a way that allows the subjects to tell their story without judgment or preconceptions.

Photograph by Maggie Steber/National Geographic
1 year, 1 day before Katie’s transplant
Taking advantage of a sunny spring day, Katie and her parents, Robb and Alesia Stubblefield, indulge in a nap in a park near the Cleveland Clinic. With Katie in a wheelchair, the three explored the park, wandering amid blossoming trees and singing birds. The outing came after Katie had spent a month in the hospital. To reposition her eyes, she had surgery to implant what’s known as a distraction device. In the three years before her transplant, Katie was hospitalized more than a dozen times.

The first time I met Katie she was in the hospital recuperating from surgery which mounted a distraction device to position her eyes in better alignment. It looked like something from the medieval ages. It was a cold rainy end-of-winter day and Katie was in enormous pain. A doctor came in to literally turn the screws of the device to bring Katie’s eyes closer together in preparation of a hoped-for donor face. This is not a time when one leaves the family alone. This is the time to listen to the family tell their story, to give them time to get to know me and give me time to get to know them. Only then did I begin photographing. The challenge is always how to throw yourself into the middle of disaster and make sense of it while respecting the subjects privacy and feelings. Most of the time I photographed her Katie suffered from steady and sometimes severe pain. Her parents, who were teachers, set their own lives aside and became constant and devoted caregivers and experts on every medication and procedure that their daughter required. They never shied away from reminding her primary surgeons what they were hoping for when Katie got a new face. After so much hard work to overcome physical and emotional barriers, Katie was finally put onto an eligibility list to become the youngest face transplant candidate in US history.

Photograph by Maggie Steber/National Geographic
6 months, 4 days before Katie’s transplant
In an examination room, Katie holds an instrument to measure the acuity of her eyesight. Robert Engel, an optometrist at the Cleveland Clinic, was evaluating her corneas. He also replaced a dislodged contact lens for one eye; the lenses help protect her corneas from abrasions caused by inward turning eyelashes.

Each time I went to Cleveland to photograph Katie and her family and the multiple doctors’ visits, I never knew what I would find. It was impossible to make plans so my plan followed the family’s plans. But by being included in these plans, I was able to cross that line between just documenting someone’s struggle to getting into the heart of the story
and family. They shared everything with me. They talked openly in front of me about Katie’s accident, the causes of it which were multiple, and what happened, what Katie remembered and what she didn’t, what Katie was experiencing, and their hopes and fears and dreams for the future. I estimate that 70% of the time I went to photograph, Katie was in the hospital or plowing through a full daily schedule of therapy and doctors. I had to exercise a real discipline in finding new opportunities to photograph, new things, new events, small gains, and the intimacy I had been afforded by the openness of the family.

Some days I struggled to wrap my own head around the story and wondered when and if I could get passed (or past?) photographs that were about process. I often felt that I failed which is very frustrating. But it is also what pushes us to go further in making photographs out of very little or finding that small thing we missed during the last hospital stay. I understood suffering like this because I have covered conflict in Africa and over a thirty-year period in Haiti which teetered constantly between peace and bloody violence. I can look at and work in almost any situation set before me because of these prior experiences and I understood the pressures hanging over Katie’s head that made her want to die. When I had bad days like that I reminded myself that the story was so much bigger, that these tragic actions do not define us, and that the victory was in surviving and moving the science forward to benefit so many people beyond Katie. Because her parents believed so deeply in Katie and her ability to return to a full life, I also had to believe in her. I came to regard her parents as warriors for their daughter. They were fierce in their dedication to get Katie the best possible outcome but in a gentle and intellectual way that was bolstered by their deep faith in God. I constantly made portraits of Katie, almost every visit, to try to make something beautiful against all odds, not to show the piece-meal face she called her Shrek face but to show her inner beauty of heart and intelligence and faith. I wanted people to see that we are more than our face, and that the thing our mothers always tell us, that we are beautiful inside, was indeed true. And then one day, three years
after Katie’s attempt to end her life, she received a gift of life, the face of 31-year-old Adrea Schneider who had fallen into a coma from a drug overdose and would not live. In A 31-hour surgery, surgeons cut off the piece-meal face of Katie that had been built from skin from her stomach and legs. To her scalp surgeons attached the muscles, nerves, veins, teeth and all the other things that were part of Adrea’s functioning face. It was a gift that cannot be compared to anything else, a donation that changed Katie’s life and gave her a second chance.

While there were many times that what I photographed was repetitive, there were also complete surprises.
One day during a portrait session Katie and her father began dancing together, singing to one another. It was a rare moment of joy. Another day when Katie was released from the hospital after a month’s stay, we went to a beautiful park. Katie was in a wheelchair and her father took her to the side of a small lake and let her sit alone, staring out at a landscape of green with blossoming trees. It was one of the few times Katie had time to herself. She listened to the birds singing and felt the gentle breeze blowing and she smelled the fragrance of spring flowers. Later in a secluded spot, the family lay on the green grass and let the sunlight pour over them as they dozed. Another high point and one that was very emotional was when Katie and her family met Sandra Bennington, the grandmother who had donated the face of her comatose granddaughter to Katie. Sandra came into the room and sat down next to Katie on the couch where Katie had been waiting and put her hand up to Katie’s chin. She looked at Katie’s face, which had been the face of her granddaughter, Adrea Schneider, and told Katie she was beautiful. Sandra had been looking to see what of Adrea still remained. She could see some things but the face becomes something else when it is transferred. It is neither the face of the donor nor the recipient but a new face, a face all its own and it would be the face that Katie would live with for the rest of her life….as long as her body didn’t reject it. That would hopefully be taken care of with drugs that Katie would take for the rest of her life. They prayed together with Katie’s family and thanked God for a new day for Katie.

Now Katie has a new face. She is learning to speak all over again. She can eat without food falling out of the corners of her mouth. She can pucker her lips. She can wrinkle her nose. She can chew because she has teeth and a stronger tongue. She can blink her eyes even though her vision is still minimal. She can smile and laugh and even sing. She can do workouts with a physical therapist close to her own age. She might even be a bridesmaid in the therapist’s upcoming wedding. Things will continue to improve with more smaller surgeries to refine the face and its abilities. These seem like small things to we who can do them without effort but for Katie and all the people who suffer from disfigured faces, they are giant.

8 months, 23 days after Katie’s transplant
Determined to help Katie live a life as normal and valuable as possible, Robb and Alesia put their own lives on hold for more than four years. Pushing through exhaustion, relying on their faith in God, they accompany their daughter to endless appointments and therapy sessions. They’re already looking into ways to improve Katie’s vision, including the possibility of eye transplants. They expect to remain in Cleveland near the clinic and Katie’s doctors for the near future.

Katie will forever be a study of science. She will be studied by her doctors and all the people who made her new life possible. Her mistake and her sacrifice will move forward the critical science of face transplants which will benefit thousands of severely burned and crippled service members. Katie is the closest this science might ever come to a stand-in for its wounded warriors because she is closest to the age to those who suffered similar traumas. But Katie has a mission beyond that which is to warn younger people not to do what she did. She plans to go to school, to become a teacher and a mentor and most importantly for this young woman who was gawked at and heard people whispering behind their hands about her put-together face, “to become a face in the crowd that no one looks at.”

I am always reminded that we photographers ask our subjects to be vulnerable before our camera and I believe we should also be vulnerable. When we photograph people so intimately and regularly, we become a part of their lives as they become part of ours. We take on their moods, their joys and worries, basically their lives. We should respect them and remember that the story is not about us, it’s about them and that we are privileged to enter lives that can teach us lessons and to love life, to gasp for the breath of a new day everyday.

 

You can read a much more detailed account in THE STORY OF A FACE by Joanna Connors in the September 2018 issue of National Geographic Magazine and online at:
https://www.nationalgeographic.com/magazine/2018/09/face-transplant-katie-stubblefield-story-identity-surgery-science

 

Maggie Steber is an acclaimed documentary photographer who has been honored with numerous awards for her humanistic stories of people and cultures in crisis in 63 countries. Among many other subjects, she has produced a significant body of work on Haiti, including a book with Aperture entitled “DANCING ON FIRE: Photographs from Haiti.” Steber was Director of Photography at The Miami Herald for four years, has served as a judge on many grant and award panels and has been exhibited internationally in solo and group shows. An esteemed master teacher, she has taught internationally including three years at the World Press Photo Joop Swart Master Classes in Amsterdam, three years with the Foundry Photojournalism Workshops, at LOOK3 Photo Festival, Bursa Photo Festival in Turkey and at various workshops throughout the United States. Her photographs are in the permanent collection of the Library of Congress and held in many other private and public collections. Her world-class clients include National Geographic Magazine, The New York Times, Smithsonian, and The New Yorker.

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2 comments

  • Maggie, you are an inspiration to me and all of my students. Your fine vision, sensitivity, and passion are palpable and an example to follow.

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