Looking at a second chance
2 years after Brigham surgeons attached a donor’s face where his used to be, James Maki no longer shuns public excursions and is settling into a new routine
FITCHBURG — For years after the subway accident that left James Maki terribly disfigured — missing his nose, upper lip, and cheeks — he mostly stayed inside and watched television. He lived just four blocks from downtown but never went there. He preferred isolation to children’s screams and strangers’ horrified stares.
This past Wednesday, two years since Maki underwent the first partial face transplant performed at Brigham and Women’s Hospital, he strolled into the City Hall Cafe on Main Street in Fitchburg.
“Hi!’’ exclaimed waitress Mona Roberts, who hadn’t seen him in a while. “You look wonderful.’’
Roberts hugged Maki warmly before he chose a table nestled in the front window, where he was clearly visible to passersby.
“I had put a brake on going out, because I didn’t like to listen to all the things people were saying,’’ Maki said after Roberts brought him hot chocolate with whipped cream.
Now, Maki, 61, walks to the diner for breakfast three or four times a week from the veterans’ home he lives in. He calls cabs for shopping at Hannaford and Walmart. He’s looking forward to attending a
Life isn’t perfect — people sometimes still notice he’s been injured in some way, and he grapples with his medication regimen and with limited eyesight. But excursions and friendly exchanges that most people take for granted are becoming pleasantly routine.
Maki is one of 14 people worldwide who have undergone face transplants — the most recent was Dallas Wiens, a 25-year-old from Texas who received the nation’s first full face transplant, performed at the Brigham this month. Wiens was painting a church when the cherry picker he was in ran into an electrical line.
Just five years ago, the experimental procedure was too controversial for most hospitals to even contemplate, partly because of ethical concerns about damaging the recipient’s psyche, so strongly is identity related to facial features. There were also questions about performing such a risky procedure on patients not facing death. But face transplant surgeons in the United States, France, Spain, and China are starting to report their results in medical journals and a number of patients appear to be doing well so far — though two are known to have died.
In January, Dr. Bohdan Pomahac, the lead surgeon on the two Brigham transplants, and his team reported in the American Journal of Transplantation that Maki’s results were “excellent,’’ with Maki regaining his ability to speak clearly, smile, eat normally, and breathe through his nose. Maki, only the second face transplant patient in the nation, suffered no apparent psychological harm. “Our patient’s acceptance of his face transplant and his appearance were unequivocally positive,’’ the surgeons wrote.
Connie Culp, the first US face transplant patient, who had her surgery at the Cleveland Clinic in 2008 after her husband shot her in the face, can smile and has spoken positively about the results of her surgery on national television.
One of two French teams doing face transplants reported results from its five cases in January in the same journal, writing that four patients no longer needed feeding and breathing tubes and all could speak clearly.
Perhaps most tellingly, two patients found full-time jobs and one found part-time work, the doctors said.
The team’s fifth patient, a 37-year-old man with burns over 80 percent of his body, died in 2009, about two months after his transplant, following a severe infection in the transplanted face and cardiac arrest.
The other patient known to have died, Li Guoxing, 32, of China, underwent a transplant in 2006 after he was mauled by a bear. He returned to his rural village and two years later, he traded in his antirejection drugs — meant to prevent the immune system from attacking the donated face — for herbal medicines, his doctors said. Doctors told the media that the herbal remedies may have caused liver damage.
Pomahac said not much is known about the transplants done in Spain.
He said it’s still too early to reach definitive conclusions about the ultimate benefits — and risks — of the procedure. Surgeons, for example, disagree about how aggressive to be. The Brigham designs its operations to preserve as much of the recipient’s tissue as possible, Pomahac said, so that if the transplant fails, the patient can be returned to his or her previous, disfigured, state. But that may mean leaving visible scars.
Some French surgeons remove more of the recipient’s tissue, transplanting a larger area. Then, if the transplant fails, it would be fatal because they have little chance of reconstructing the patient’s face, Pomahac said.
“The bottom line is we are all learning,’’ he said. “This is a new field that has a huge promise. We will figure out a way to do it right.’’
For Maki, the once-scarlet scars that run under his eyes and down both cheeks to the corners of his mouth are so faded they are noticeable only close-up. He has his donor’s strong, straight nose and a full head of dark hair.
Maki said he has accepted that he “looks quite a bit different’’ than before his injury. “I would prefer that I look like I used to,’’ he said, “but I had an accident, and that’s the price you pay.’’
John Maki, who lives in Seattle and visited his brother in November, said he was surprised at how well Maki has healed. “I couldn’t believe how good it looked,’’ he said. “He can go out in public view and people won’t scream.’’
Family relationships have improved, too. When Maki fell onto the electrified third rail at the Ruggles subway station in June 2005, he also lost the roof of his mouth to burns. “You just couldn’t understand his words. He would get really frustrated,’’ John Maki said. “He can actually talk now, and that’s what he loves to do — talk. Especially about sports, boxing, the Red Sox.’’
Jim Maki said he also talks daily to his daughter, a graduate student at Boston University.
He’s had one mild to moderate episode of transplant rejection, which was successfully treated. Two or three other possible instances of rejection, Pomahac said, turned out to be rosacea, a skin condition that Maki inherited from his donor, the late Joseph Helfgot of Brookline. He also inherited facial hair and now shaves regularly for the first time in his life.
He’s had several more surgical procedures, including a chin implant and the removal of excess skin that had been drooping around his jaw. Soon after the transplant, which included Helfgot’s upper jaw, his teeth began to deteriorate and doctors removed them, Maki said. He is now awaiting dentures or implants — which will bring him even closer to a normal appearance — and allow him to eat a wider range of food.
At the same time, Maki is coming to terms with what are likely to be permanent limitations. He had hoped to buy a car with proceeds from a book written by Helfgot’s wife, Susan Whitman Helfgot, about her decision to donate her husband’s face. But doctors have told him he won’t see again out of his right eye, injured in the subway accident, making driving impossible.
Recently, he briefly moved in with his wife, from whom he is separated, and accidentally took too much antirejection medication — which could put him at greater risk for infections. Pomahac and Brigham nurses — who remain very protective of Maki — urged him to move back into the Veterans Homestead, where a nurse or certified nursing assistant are always on hand.
Aside from his two antirejection drugs, which must be swallowed at precise intervals, he takes insulin for diabetes, the development of which could have been hastened by the transplant drugs. “We’re probably more anxious than we need to be,’’ Pomahac said.
“If he lives on his own some place, I am worried . . . his eyes are not very good. He’s a free man. But I think he needs more help than he appreciates.’’
Maki said he is staying put for now, but may eventually look to move out on his own. He has called one of the nurses he remains close to at the Brigham, Lorrie MacDonald, and offered to talk to Wiens about his experience.
“I am happy I did it. I would have never said no,’’ Maki said. “All I can tell him is what I went through and what I’m going through . . . still.’’
Liz Kowalczyk can be reached at firstname.lastname@example.org.