Face transplant recipient looking forward with dignity
His tragic accident behind him, New England’s first face transplant patient tells of an arduous journey and a life renewed
Since the subway accident that left him horribly burned, adults had screamed when seeing James Perry Maki’s disfigured and noseless face. Children would recoil.
So four days after Maki became the nation’s second face transplant recipient last month, he badly wanted a mirror. “I just wanted to see what the new Jim looked like,” he would say later.
Finally, psychiatrist Dr. Christine Kim handed a mirror to Maki as he sat in his bed in the intensive care unit at Brigham and Women’s Hospital.
He stared in wonderment. Scars ran under his eyes and down both cheeks to the corners of his mouth, but the new face closely matched the complexion of his own skin. His nose looked nearly perfect, strong and straight.
“I can’t believe you made me look so close to what I used to look like,” he recalls telling Dr. Bohdan Pomahac, his lead surgeon.
“What do you think?” Pomahac remembers asking.
“I’m happy,” Maki replied.
It was the moment he had been hoping for since first hearing in 2007 that doctors in Boston planned to start performing face transplants.
The procedure was considered so radical and difficult at the time that doctors had dared to try it on only three patients worldwide. But Maki felt it was his best chance to lift the burden his life had become.
On April 9, Maki received a new face from a Brook line donor, Joseph Helfgot, who had died after a heart transplant.
Since the 17-hour surgery, Maki has had two minor instances of rejection of the new face, which were not unexpected and which were successfully treated with steroids, Pomahac said. Maki is still recovering at the Brigham, where doctors are adjusting his antirejection medication to keep his immune system from attacking the transplanted tissue. They expect he will be sent home next week.
During interviews with the Globe in his hospital room this week, Maki’s right eye was stitched almost shut to protect it for now, because he cannot close it on his own. Dark stubble peppered his chin and cheeks; Helfgot, the donor, had a thick beard. Maki has never been able to grow one.
Maki still drools slightly, a condition that will clear up once he gains full control of the muscles in his new face. As he spoke, nurse Lorrie MacDonald handed him tissues.
Maki, 59, who planned to participate in a press conference at the hospital today, said he wanted the public to know about his background, but also wanted to guard his privacy, including where in New England he intends to live and the names of his daughter and wife, from whom he is separated.
Both have visited several times since the transplant. Maki’s 23-year-old daughter, who graduated this year from Northeastern University, broke down when she first walked into the ICU. “I never thought I’d see you like this again,” she cried.
Maki grew up in Amherst, where his late father, John Maki, was vice dean of the College of Arts and Sciences at the University of Massachusetts. After high school, Maki went to Vietnam in 1969 as a combat engineer. There, he saw “some horrible things” and became addicted to drugs. When he returned home after a year, his life “was dominated by drugs,” Maki said in prepared notes he asked MacDonald to read. In 1999 an aneurysm burst in his brain, and Maki, who had worked on the assembly line at General Motors in Framingham, went on disability.
Maki said he does not remember anything from the June day in 2005, when he fell onto the electrified third rail in the Ruggles subway station. His face and right arm were badly burned, and he was taken by ambulance to the Brigham, where Pomahac happened to be the burn surgeon on call. Pomahac remembers that Maki had lost his nose, upper lip, his cheeks, his right lower eyelid, the roof of his mouth, as well as underlying muscle, bone, and nerves.
“It wasn’t clear at the time whether he would be able to survive it even if we tried hard,” said Pomahac.
A face transplant did not cross Pomahac’s mind; it was still six months before French doctors would perform the first such procedure on Isabelle Dinoire. Surgeons removed damaged tissue from Maki’s face, closed the space between his mouth and nasal cavity so that he could eat, and pulled some of the skin from his outer cheeks over the burned portions.
“I knew there wasn’t much else we could do,” Pomahac said.
In and out of hospitals after the accident, Maki said he stopped using drugs, but he endured frequent ridicule at the movies, the supermarket, and walking on the street.
“Two 12-year-olds asked me: ‘Are you real? You look like a robot,’ “ he recalled. “I told them exactly what had happened to me.”
Maki’s speech was garbled, and most people could not understand him. “I tried not to go out too often,” he said. “I didn’t like the way people would react to me.”
Then one night in summer 2007, Maki saw Pomahac on the evening news, discussing a new face transplant program he planned to start at the Brigham. At that time, Maki did not qualify for the program; it was initially intended for a very narrow group of patients who were already taking immunosuppressant drugs. But soon after, Pomahac and Maki began talking about the possibility, and the Brigham later expanded the protocol with Maki and several other patients in mind to include very deformed patients.
During the summer and fall of 2008, Maki underwent intensive physical and psychological screening to make sure he was healthy enough for the transplant. Pomahac told him that the medication could have terrible, even fatal, side effects, but Maki never wavered.
“It was almost scary; I had to slow him down,” Pomahac said. “I said the face might not match exactly. He said any face is better than none.”
Maki said he never had doubts. “My life up to that point was a mess. I knew if I had the surgery I’d have a chance for a normal life again.”
The surgical team prepared for the surgery, too, traveling to Brussels for practice runs on cadavers with help from the French transplant team.
In the end, Maki got a near-perfect match; Helfgot was 60 and had similar skin color. During the first couple of weeks after the operation, Maki often checked his face in the bathroom mirror and especially his new top teeth, said MacDonald, his nurse. Doctors eventually will make dentures to fit his bottom jaw.
“He kept asking if he looked good,” she said. “I told him he looked fabulous!”
He wears a white BWH baseball hat, on which his doctors and nurses and other hospital staff have signed their names in black ink. Only Pomahac signed his name in red. “You don’t get red for nothing; you have to earn it,” Maki said.
He is not sure what the future holds, but said he sees his new face as a new beginning. He may finish college - he has one more year at UMass-Amherst - or work with Vietnam vets. Pomahac is discussing with the Department of Defense whether it’s possible to provide face transplants to veterans disfigured in the wars in Afghanistan and Iraq.
The hospital will not charge for Maki’s surgery, which cost an estimated $200,000, and the surgeons donated their time.
Pomahac said it will take several months for Maki’s new face to fully integrate with his original face. As nerve endings grow together, he will increasingly be able to smile, blush, feel pain, and chew solid food. He is currently eating soft or pureed meals, but hasn’t yet had his favorite food, which is sushi.
Last week, Dinoire, the French transplant patient, was in New York City and took a train to Boston to visit Maki at the hospital. She told him that even now, five years after her transplant, she is gaining more movement in her face. “She seems to be doing really well,” Maki said. “It made me feel good.”
On Tuesday Maki got another visitor: Susan Whitman, the widow of Joseph Helfgot. Whitman initiated the visit through the New England Organ Bank “primarily because I wanted him to know that it was OK, that our family was okay, and that he didn’t need to feel guilty.” She said Maki looked nothing like her husband, and that she was surprised at how strong he seemed.
Maki wanted to know about her husband’s personality and how he died. And he wanted to thank her, he said.
They talked for about a half-hour and then tightly embraced.
Liz Kowalczyk can be reached at email@example.com.