Andy Sandness, de 32 años, espera con ansias poder vivir como una persona normal luego de pasar una década con una grave deformidad facial. Se convirtió en el primer paciente de Mayo Clinic en recibir un trasplante de rostro en junio de 2016.
Andy Sandness decided on a whim to take in a hockey game on a trip to the Twin Cities. He headed to the arena, bought a box of popcorn and watched intently among nearly 18,000 other fans.
"I just felt … normal," he recalls. "I didn't even think about it until the next morning when I woke up. Nobody stared at me. Nobody questioned me. Nothing happened. I felt like another face in the crowd."
For a decade, it was a feeling that eluded Andy as children stared and whispered while the eyes of adults lingered a bit longer, trying to process what they'd seen.
For Andy, it was another ever-present reminder of an impulsive mistake he made in 2006.
Andy, now 32, grew up in scenic Wyoming as an avid outdoorsman — enjoying hunting, fishing, swimming and more. But Andy also struggled with symptoms of depression in his late teens and early 20s.
Then one December night, he acted on his suicidal thoughts. He pointed his hunting rifle under his chin and pulled the trigger. Andy destroyed his upper and lower jaw, nose, upper palate, cheekbones, part of his eye sockets and all but two teeth.
"The only thing I got to see was him coming out of the emergency room … with a straw coming out to breathe," says Andy's father, Reed.
When Andy woke up in the hospital, he was grateful to be alive, but he knew his life would never be the same.
"My mom was there by my bedside," Andy says. "I'll never forget the look of pain that she had in her eyes that day."
Andy survived, but had a serious facial deformity. He had no lips to suck liquids. He couldn't eat anything hard such as nuts, cereal or even potato chips. Eventually, doctors fitted him with a prosthetic nose, but it didn't look good, it would fall off often, and it was not a natural replacement for his nose.
The social stigma was even worse. His deformity was obvious to anyone who looked at him.
"If I was at Wal-Mart or the mall, I'd avoid situations with young children, just because I didn't want to scare them," Andy says. "If I would see children coming, I would either look away from them or basically just hide."
Though adults were more restrained, he knew how his appearance affected people.
Andy was stabilized and taken to Mayo Clinic in the immediate aftermath of the incident. Samir Mardini, M.D., was the reconstructive surgeon on call and began the process of rebuilding Andy's face, including the bony structures as well as the soft tissues of the face.
"Andy is a very special person," Dr. Mardini says. "I tell patients who have major deformities that require reconstruction that we're going to go through a journey together and that I'm going to be there for you the entire journey. You need to also be strong, patient and persevere with me through this journey. When we have difficult times, we will get through them together.
"I had this conversation with Andy, because I knew he had a lot to go through. From early on, I felt a bond with Andy. I felt that he was the type of person that would go through this journey with me."
Over the next 10 years, Dr. Mardini and Andy worked together. Dr. Mardini did what he could, but conventional techniques couldn't restore Andy's nose, mouth, teeth or overall appearance to an optimal level.
As a result, Andy isolated himself with family and a few close friends. He took a job in the Wyoming oil fields, where he didn't have to be around many people, and he spent a lot of time in the woods by himself, hunting and fishing.
He wanted a family and kids, but his appearance made even just dating a dream.
Then, one day nearly five years ago, Dr. Mardini, surgical director of the Essam and Dalal Obaid Center for Reconstructive Transplant Surgery, informed Andy that there may be another option — face transplantation.
One of the first things Dr. Mardini told Andy about face transplantation was that any patient who was considering it would have to understand it very well.
Dr. Mardini shared the knowledge he had at the time — the procedure could restore many structures in the face to improve appearance and function, but it's far from perfect and, like any transplant, there were real risks of rejection and other complications.
Even under the best-case scenario, Andy would have to take a daily regimen of immunosuppressant drugs for the rest of his life, forcing him to make life changes to avoid illness.
Andy talked it over with friends and family. At Mayo Clinic, he worked with other experts in transplant including Hatem Amer, M.D., medical director of the Essam and Dalal Obaid Center for Reconstructive Transplant Surgery, as well as experts in psychiatry, psychology, social work, pharmacy, nutrition and more.
Dr. Mardini made it clear that each member of the Mayo Clinic team, from dietitian to transplant physician, had veto power — if they weren't satisfied that Andy was as informed as he could be, there would be no transplant.
Andy rose to the challenge, learning everything he could about the procedure and its potential implications.
An Integrated Approach
Andy es consciente del acto generoso de la familia del donante. «Sin el donante y su familia, nada de esto hubiera sido posible», indica. «No sé cómo agradecerles por lo que hicieron y por lo que me han dado».
Mayo Clinic has the largest integrated transplant program in the United States. On average, its more than 150 surgeons and physicians on campuses in Arizona, Florida and Minnesota perform more than 1,000 solid organ transplants each year — about three a day.
But physicians in the Mayo Clinic Essam and Dalal Obaid Center for Reconstructive Transplant Surgery and the Mayo Clinic Center for Regenerative Medicine knew they'd have to develop a lot more expertise to help Andy.
"A face transplantation is a combination of so many other surgical procedures that we do routinely, including eyelid surgery, jaw surgery, facial nerve surgery, aesthetic surgery, as well as reconstructive microsurgery," Dr. Mardini says.
Dr. Mardini gathered a large team of Mayo Clinic experts. Those involved in Andy's face transplant surgery included plastic surgeons and an ophthalmologist. Preoperatively and postoperatively, specialists included those in dentistry, transplant medicine, dermatology, psychiatry and psychology, critical care, anesthesiology, radiology, infectious diseases, rhinology, tissue typing and immunology, regenerative medicine, neurology, nursing, physical medicine and rehabilitation, social work, and speech and language pathology, among many others.
The team also included staff from LifeSource, the federally designated organization for organ donation in Minnesota, North Dakota and South Dakota.
To prepare for Mayo Clinic's first face transplant, Dr. Mardini and his team spent 50 weekends perfecting the procedure itself in the human anatomy lab. They collaborated with a group of engineers with expertise in taking CT scans of the head and making models that allow the surgeons to perform the surgery virtually — meaning the bone cuts that occur during the face transplant are performed on a computer before the actual surgery starts. The engineers then produce guides that help during the surgery. The guides clip on to the bones of the donor and the recipient, and they help make the cuts in the bone exactly the way they were planned during the virtual surgery.
When this is done as planned and the face of the donor is transferred to the recipient, the bones fit perfectly.
After more than three years of rehearsing, the team was ready.
Dr. Mardini was on his way to Las Vegas for a meeting in June 2016 when he received the call just before boarding the plane — a match became available.
He immediately returned to Mayo Clinic and reached out to all the team members, beginning the process of virtual surgical planning with the same team of engineers that had been working with him on the prior rehearsals. All team members were in town, a stroke of good luck.
As they had practiced, the procedure started out as two simultaneous operations — one to procure the face of the donor and one to prepare the recipient, Andy.
According to LifeSource, the donor was a 21-year-old man who fatally shot himself. Despite the family's grief, the donor's wife discussed her husband's wishes to donate his organs and tissues — which included his heart, lungs, liver and kidneys. At that point, LifeSource additionally raised the possibility of donating facial tissue to a patient on the waiting list.
"Organ transplantation is only possible due to the generous gifts of life from donors. There are not nearly enough organs for patients waiting for them, and many of our patients die before a lifesaving organ becomes available," says Charles B. Rosen, M.D., director of the Mayo Clinic Transplant Center. "We encourage everyone to discuss organ donation as part of their end-of-life plans and to share that decision with friends and family members."
The Mayo Clinic team of seven surgeons and more than 40 operating room staff members transplanted the entire lower face, including the nose, jawbones, teeth, cheekbones and all skin from ear to ear and down below the chin. Except for the tongue, everything below the eyes was transplanted.
A major aspect of the surgery was identifying which nerves control which functions — smile, eyelid closure, mouth closure, lip depression — on both donor and recipient, then matching them up.
"The nerve surgery itself was happening at hour 30, 35, which is the most intricate part of the reconstruction," Dr. Mardini says. "But you have so much adrenaline and enthusiasm during the surgery that hour 10, 20, 30 and beyond feel pretty much the same."
After 56 hours in the operating room, the team had completed Mayo Clinic's first face transplant — the next step to give Andy back his life.
Andy's New Face
Tres semanas después de su trasplante de rostro, Andy recibe un espejo del Dr. Mardini y ve su reflejo por primera vez. «Me di cuenta de que por fin había vuelto a ser normal», dice Andy.
Andy sits in his hospital room, packed with family, doctors, nurses and more.
A fresh line of stitches surrounds his entire face. It starts at his throat, works its way up to his ear, under his hair, arcs to his eye and under it, curves over his nose then takes the same path across the other side, back to his neck.
It's been three weeks since Dr. Mardini led the team who conducted Mayo Clinic's first face transplant on Andy.
The time is right at this point in Andy's recovery for him to see his new face for the first time — his mental health is strong and the swelling has gone down, so Andy will actually see his new image and not a bloated misrepresentation.
Andy begins to write on a yellow notepad — it'll be several more weeks before he gains enough muscle control to talk clearly or even smile. The room goes silent.
He hands the notepad to Dr. Mardini. It says, "The gratitude I have for everything that everyone has done for me is remarkable."
Dr. Mardini exhales, swallows hard a couple of times and says quietly, "We appreciate that, Andy."
A lot of hard work and countless hours have gone into making this moment happen. As Dr. Mardini hands Andy the mirror, the doctor can barely contain his excitement.
Dr. Mardini laughs a little, "OK, Andy, how are we going to do this? Here, you take the mirror. You just do it."
"Wow," Andy says softly upon looking at the reflection, eyes locked deep into the mirror. Andy sets it down and looks at Dr. Mardini. Everyone can make out what he says — "This is unbelievable."
He lifts the mirror again, his eyes moving up and down, and he turns his head little by little. Then, he begins to write. Dr. Mardini reads his words to the room — "I can't believe it. Unbelievable!"
Dr. Mardini turns to grab a tissue to wipe away tears as Andy keeps writing — "Far exceeded my expectations."
Dr. Mardini's voice nearly fails him as he looks at Andy and says, "You don't know how happy that makes us feel."
Dr. Amer says Andy's transplant was the culmination of complex care that dates all the way back to the guiding principles of the Mayo brothers.
"Throughout the entire journey, we have shared Andy's concern and sympathy for the donor family who have made this amazing gift possible," says Dr. Amer. "Their selfless gift gives hope to so many other people who are living reclusively, have limited function and are socially isolated due to facial deformities."
The Mayo Clinic Essam and Dalal Obaid Center for Reconstructive Transplant Surgery was supported by a generous gift from Tarek Obaid. The Essam and Dalal Obaid Foundation was established in honor of the Obaid family's values — particularly hope — which they consider the most powerful emotion, providing the fortitude to persevere and the well from which people draw strength.
The New Andy
Andy spent several more months at Mayo Clinic as swelling continued to go down and he worked with speech and physical therapists. In February 2017, he returned home to Wyoming.
"Without the donor and the donor family, none of this is possible," Andy says. "I can't say thanks enough for what they did and what they gave me."
Already, he's noticed differences all around him — as an anonymous hockey fan, browsing a sports store at the mall and especially when he interacts with kids.
"I jumped on the elevator coming to an appointment and there was a little kid in a stroller with his mom," Andy recalls. "He looked at me, stared a second, and went back on with playing with his toys. Right then I knew we had achieved exactly what I wanted."
Andy reflects on his past but is hopeful for his future, grateful a hasty mistake more than a decade ago is finally in the past.
"I am looking forward to getting out there and enjoying the things I missed. I missed 10 years of my life. I'm going to do a lot of things I wasn't able to do before, like go swimming, chew my food, kiss my niece and nephew, and go to their wrestling tournaments. I'll just fit right in with the crowd," Andy says. "This is the new me."
Andy's journey was made possible through philanthropic support. Your gift helps people at Mayo Clinic look forward to new tomorrows.
For more information about organ donation, please visit the United Network for Organ Sharing or find your state's registry.
Listen to Andy's experience and learn more about face transplant at Mayo Clinic.