Twin tragedies give survivor a new face
Face transplant recipient, Andy Sandness, is pictured before, during and after his life-changing face transplant.
Sharon Cohen, The Associated Press
Published Friday, February 17, 2017 2:01AM EST
Last Updated Friday, February 17, 2017 1:12PM EST
ROCHESTER, Minn. -- He'd been waiting for this day, and when his doctor handed him the mirror, Andy Sandness stared at his image and absorbed the enormity of the moment: He had a new face, one that had belonged to another man.
His father and his brother, joined by several doctors and nurses at Mayo Clinic, watched as he studied his swollen features. He was just starting to heal from one of the rarest surgeries in the world -- a face transplant, the first at the medical centre. He had the nose, cheeks, mouth, lips, jaw, chin, even the teeth of his donor. Resting in his hospital bed, he still couldn't speak clearly, but he had something to say.
He scrawled four words in a spiral notebook:
"Far exceeded my expectations," he wrote, handing it to Dr. Samir Mardini, who read the message to the group.
"You don't know how happy that makes us feel," Mardini said, his voice husky with emotion as he looked at the patient-turned-friend he had first met nearly a decade earlier.
The exchange came near the end of an extraordinary medical journey that revolved around two young men. Both were rugged outdoorsmen and both just 21 when, overcome by demons, they decided to kill themselves: One, Sandness, survived but with a face almost destroyed by a gunshot; the other man died.
Their paths wouldn't converge for years, but when they did -- in side-by-side operating rooms -- one man's tragedy offered hope that the other would have a second chance at a normal life.
It was two days before Christmas in 2006 when Andy Sandness reached a breaking point.
He'd been sad and drinking too much at that time. That night after work while "super, super depressed," he grabbed a rifle from a closet. He stared at it for a while, then put a round in the chamber. He positioned the barrel beneath his chin, took a deep breath and pulled the trigger.
Instantly, he knew he'd made a terrible mistake. When the police arrived, an officer who was a friend cradled him in his arms as Sandness begged, "Please, please don't let me die! I don't want to die!"
He was rushed from his home in eastern Wyoming, treated at two hospitals, then transferred to Mayo Clinic. When he woke, his mother was holding his hand. She'd always been a strong woman but that day, her face was a portrait of unfathomable pain. The bullet had obliterated his mouth, so he motioned for a pen and paper.
"I'm sorry," he wrote.
"I love you," she replied. "It's OK." But all Sandness could think about was how he'd hurt his family -- and just wonder what was next.
The answer came quickly when he met Mardini, a plastic surgeon whose specialty is facial reconstruction. As a newcomer at Mayo, the doctor was on call Christmas Eve. Over the next few days, he reassured Sandness that he'd fix his face as best he could.
"I just need you to be strong and patient," he said.
It would take time and much surgery. And despite their skills, the doctors couldn't miraculously turn him back into that guy with the orthodontist-perfected smile.
Sandness couldn't bear to see himself, so he covered his hospital room mirror with a towel. He had no nose and no jaw. He'd shot out all but two teeth. His mouth was shattered, his lips almost nonexistent. He'd lost some vision in his left eye. He needed breathing and feeding tubes at first.
Mardini and his team removed dead tissue and shattered bones, then connected facial bones with titanium plates and screws. They reconstructed his upper jaw with bone and muscle from the hip; they transferred bone and skin from a leg to fashion the lower jaw. They used wires and sutures to bring together his eyelids, which had been spread apart by the powerful blast.
They made progress, even if it didn't always look that way.
After about eight surgeries over 4 1/2 months, Sandness returned home to Newcastle, Wyoming, a hamlet of 3,200, where friends and family embraced him. He worked at a lodge, in the oil fields and as an electrician's apprentice.
But his world had shrunk. When he ventured to the grocery store, he avoided eye contact with children so he wouldn't scare them. Occasionally, he heard them ask their mothers why he looked that way.
He sometimes lied when folks asked what had happened. "I would tell them it was a hunting accident," he says. "I felt like they didn't need to know."
He had almost no social life; on a rare night out to shoot pool, a guy taunted him about his appearance. He retreated to the hills, where he could hunt elk and fish walleye, unseen.
"Those were real tough times for him,' says his father, Reed. "He was insecure. Who wouldn't be?"
Sandness learned to adapt. His mouth was about an inch wide -- too small for a spoon -- so he tore food into bits, then sucked on them until he could swallow the pieces. He wore a prosthetic nose but it constantly fell off outdoors; he carried glue to reattach it. It discolored often, so he had to paint it to match his skin.
"You never fully accept it," he says. "You eventually say, 'OK, is there something else we can do?"'
There was, but the prospect of 15 more surgeries Mardini had mapped out scared him. He didn't want more skin grafts, more scars or dental implants. Even then, he'd still look deformed.
Over the next five years, Sandness made yearly visits to Mayo. Then in spring of 2012, he received a life-changing call.
Mardini told him it looked like Mayo was going to launch a face transplant program and Sandness might be an ideal patient. The doctor had already begun travelling to France, Boston and Cleveland to meet doctors who'd done face transplants.
Mardini tried to temper his patient's enthusiasm. "Think very hard about this," he said. Only about two dozen transplants have been done around the world, and he wanted Sandness to understand the risks and the aftermath: a lifelong regimen of anti-rejection drugs.
But Sandness could hardly contain himself. "How long until I can do this?" he asked.
He followed Mardini's advice to research the surgery. It was far more complicated than he'd imagined, but he was undeterred.
"When you look like I looked and you function like I functioned, every little bit of hope that you have, you just jump on it," he says, "and this was the surgery that was going to take me back to normal."
Three more years passed as Sandness waited.
By then, Mayo Clinic had completed a long internal review to get the face transplant program approved. Sandness had to undergo a rigorous psychiatric and social work evaluation to address, among other things, a key question: Should this surgery be performed on someone who'd attempted suicide?
Several factors were in his favour: His resilience and motivation, a strong support network of family and friends, a long-standing rapport with Mardini and a gap of several years since the shooting. Doctors also noted others with self-inflicted injuries, such as excessive drinkers, have received liver transplants.
"I don't think there's anybody who doesn't deserve a second chance," Mardini says.
Asked by the doctors what he expected from the transplant, to make sure he had realistic goals, Sandness said he wanted a working nose, the ability to bite, swallow, chew, and to "get good stares as opposed to bad stares."
These incremental steps benefited everyone, says Dr. Hatem Amer, Mayo's medical director of reconstructive transplantation.
"He wasn't rushing us, and we weren't rushing him," he says. "He really understood what he was embarking upon."
Sandness says he was concerned both about the possibility of rejection and potential side effects of anti-rejection drugs, including skin cancer, infection, diabetes and weakening of the bones.
Mardini and his team devoted more than 50 Saturdays over 3 1/2 years to rehearsing the surgery, using sets of cadaver heads to transplant the face of one to the other. They used 3-D imaging and virtual surgery to plot out the bony cuts so the donor's face would fit perfectly on Sandness.
In January 2016, Sandness' name was added to the waiting list of the United Network for Organ Sharing.
Mardini figured it would take up to five years to find the right donor: a man with matching blood and tissue types, roughly the same size as Sandness, within a 10-year age range and a close skin tone.
But just five months later, Mardini got a call: There might be a donor. He phoned Sandness, cautioning it was just a possibility.
The next day, Mardini got the final word: The donor's family had said OK.
The decision came from a 19-year-old newlywed mourning the sudden loss of her husband.
In early June, Calen "Rudy" Ross fatally shot himself in the head. His devastated widow, Lilly, was eight months pregnant.
Despite her grief, she was committed to carrying out her husband's wishes: On his driver's license, Ross, who lived in Fulda, Minnesota, had designated he wanted to be an organ donor. Lilly met with a co-ordinator from LifeSource, a non-profit group that works with families in the upper Midwest to facilitate organ and tissue donation.
Since Ross had been healthy and just 21, his heart, lungs, liver and kidneys could be donated. But additional screening determined he could do even more: He was a good match for a man awaiting a face transplant at Mayo Clinic.
In a second conversation, LifeSource broached the idea to Lilly.
"I was skeptical at first," she says. "I didn't want to walk around and all of a sudden see Calen." She was reassured the donor had his own eyes and forehead and would not be recognizable as her husband. After consulting with her husband's best friend, she gave her consent.
A CT scan, other tests and a photo sent to Mardini by LifeSource confirmed the two men were a good match. Mardini said when the doctors studied Ross' photo, "we got chills when we actually saw how close they were in hair colour, skin -- just the overall look. It could be his cousin."
Late on June 16, Sandness was wheeled into surgery, accompanied by Mardini, who was showing him photos of his two small children. Over the years, the two say they've become as close as brothers.
"There was not a second of doubt that everything was going to go well," Sandness says.
"Everybody went into this totally knowing their role, knowing what to expect," Mardini recalls. "Every step has been thought out 1,000 times."
Mardini had a parting message: "We're looking forward to seeing you with a new face."
In adjoining operating rooms, some 60 surgeons, nurses, anesthesiologists and others had gathered for what would be a 56-hour marathon.
The surgery that started shortly before midnight Friday was over early Monday morning.
It took about 24 hours to procure the donor's face, which involved taking bone, muscle, skin and nerves, and almost the same time to prepare Sandness. His entire face was rebuilt below his eyes, taking an additional 32 hours. The medical team rotated, many taking four-hour breaks through the weekend.
One of the most intricate parts of the surgery was identifying facial nerve branches on both men and stimulating them with an electric current to determine their function. That allowed doctors to make the correct transfers, so when Sandness thinks about smiling or closing his eyes, for example, those movements actually happen.
After the surgery ended, Mardini proclaimed it "a miracle."
Sandness, who was sedated for several days, wasn't allowed to see himself immediately. His room mirror and cellphone were removed. His father, Reed, served as his eyes.
"I said, 'Andy, I've never lied to you. I'm telling you you're going to be happy with what you see,"' he recalls. "He was quizzing me and the nurses all the time."
Three weeks later, when he finally did see his face -- a scene captured on a Mayo video -- his father says it "was just a real tearful, hard-to-hold-back time ... beyond our wildest dreams."
Sandness was overwhelmed. "Once you lose something that you've had forever, you know what it's like not to have it," he says. "And once you get a second chance to have it back, you never forget it."
Just having a nose and mouth are blessings, he says. "The looks are a bonus."
Months earlier, both he and Lilly Ross had expressed interest in learning about each other. She particularly wanted him to know about her husband, an adventurous, spontaneous guy.
Last fall, she wrote to Sandness and the five others who received her husband's organs. She described Ross, her high school sweetheart, as a "giving person" who loved hunting, trapping and being with his dog, Grit. "I am filled with great joy knowing that he was able to give a little of himself to ensure a better quality of life for someone else," she wrote.
As for the face transplant, she thought of her baby son when she agreed to it. "The reason that I decided to ... go through with it was so that I can later down the road show Leonard what his dad had done to help somebody," she said in a video produced by LifeSource.
Lilly was given photos of Sandness before and after the transplant. That's when she learned of uncanny similarities between the two men -- not just their passion for the outdoors, but the way they stood in their hunting photos. "It was amazing how good he looked and how well he's doing,"' she says of Sandness. "I'm excited for him that he's getting his life back."
She also noticed one small detail -- a small bare patch in the middle of his bearded chin, just as on her husband's face.
Both she and Sandness hope to meet one day. For now, he wrote her a letter of appreciation. Referring to her husband's favourite things, he said: "He's still going to continue to love hunting and fishing and dogs -- through me."
Andy Sandness can pinpoint the day he looked normal.
About three months after the transplant, he was in an elevator when a little boy glanced at him, then turned to his mother without appearing scared or saying anything. "I knew then," he says, "that the surgery was a success."
Last December, he had follow-up surgery to tighten skin on his face and neck and build up bone around his eyes so they're not so recessed.
His facial muscles are growing stronger. He received speech therapy to learn to use his tongue in a new mouth and jaw, and enunciate clearly.
He's thrilled to smell again, breathe normally and be eating foods that were off-limits for a decade: apples, steak and pizza that he shared with his doctors.
His transformation isn't just visible. After the shooting, he says, when he dreamed, he still had his old face. Now, his new face appears in his dreams.
Sandness, now 31, plans to return to Wyoming, work as an electrician and, he hopes, marry and have a family someday.
For now, he savors his anonymity. Recently, he attended a Minnesota Wild game. He bought some popcorn. He watched some hockey. He didn't see any stares or hear any whispers.
He was, as he says, "just another face in the crowd." Just thinking about that makes him smile.