One man's lost dream provides new face for another man
Joseph Helfgot's wife agreed to transplant after he died in surgery
Sunday, October 24, 2010
When Susan Whitman Helfgot saw Esther Charves jerk back in surprise, she knew something big was about to happen.
It was April 2009, and in the space of two days, Ms. Helfgot had gone from the excitement of learning that her husband Joseph would finally get the heart transplant he had wanted for so long, to the grief of his tragic brain death during the surgery.
Now, she was meeting at Brigham and Women's Hospital in Boston with Ms. Charves, an organ donation specialist, to talk about how her 60-year-old husband might become an organ donor himself.
"I made this joke [saying], 'Don't tell me you want my husband's Jewish nose?' and I saw her head snap back and I think I knew it right then."
A few seconds later, she was asked to consider donating her husband's face for the nation's second face transplant.
It was a stunning request, "but I didn't flinch when it came to thinking about whether it was the right or wrong thing to do," said Ms. Helfgot, 55, in an interview last month. "When Esther said, 'Imagine a man who can't breathe or swallow or talk or function normally,' I just thought, 'I was raised to believe the body is just the body and the spirit is the spirit, and if you're going to give someone's heart to somebody, why not give them the face?' "
The man waiting for that decision was James Maki, now 61, a Vietnam veteran and former heroin addict who had fallen off a subway platform in Boston in 2005 and landed face-first on an electrified third rail.
The accident obliterated the middle of his face and disabled his right arm and hand. After a series of surgeries, he was left with a gaping hole where his nose had once been and a surgically implanted piece of tissue to separate his nasal passage from what was left of his mouth.
Sitting next to Ms. Helfgot during last month's interview, Mr. Maki remembered when he got the news.
"The day they called me up and told me to come in, [saying] 'We have a donor' -- I had thought I would have to wait a much longer time, so I just said, 'Let's go.' You know, it's what I'd been waiting for, and thanks to Susan and her husband, it happened."
Because face transplants are such natural headline grabbers, it is easy to forget how rare they still are.
Only 13 have been done so far -- eight in France, two in Spain, two in the United States and one in China. Eleven of those patients survive.
The first U.S. face transplant occurred in December 2008 at the Cleveland Clinic. Connie Culp, 47, of Unionport, Ohio, about an hour west of Pittsburgh, had the middle of her face replaced after it had been destroyed by a shotgun blast from her husband.
Mr. Maki's transplant followed four months later, and there have been none done in America since then. Last summer, the University of Pittsburgh Medical Center won approval from Pitt's Institutional Review Board to do face transplants, but is still getting organized.
The Boston case is the only one in which the recipient has met the donor's family.
Ms. Helfgot didn't intend to become a public figure, but an anonymous tip led the Boston Globe to discover that the Helfgots had made the donation. "I had planned to remain anonymous," she said, "but once it became public knowledge that Joseph was the donor, there was a lot of contact with the media."
And soon, there was a book in the works. "The Match: Complete Strangers, a Miracle Transplant, Two Lives Transformed," by Ms. Helfgot and co-author William Novak, was published this month by Simon & Schuster.
The first encounter
Thanks to Hollywood productions like "Face/Off," many people think a face transplant means seeing your loved one's image on someone else.
But face transplant surgeons have taken pains to point out that a transplanted face is highly unlikely to look the same as it did on the donor because it is being laid down over a different bone structure and is surrounded by different features.
Ms. Helfgot never worried about seeing Joseph's face on Mr. Maki, even as she got ready to meet him for the first time a month after the operation.
"I wasn't expecting a lot there, except to see a man who'd had major surgery," she said. Photographs of Mr. Helfgot and of Mr. Maki before and after the surgery also drive home the point that none of the faces looks too much like the other.
Even now, 18 months after the operation, the only vestige of her husband that is really recognizable on Mr. Maki is his nose, Ms. Helfgot said.
"The nose is the same nose, but then again, how different are noses really? I mean, if I passed Jim on the street and didn't know he had Joseph's nose, I wouldn't say, 'You know, that nose is really familiar.' "
The other reason a transplanted face is unlikely to look like the original, she said, is that it is linked to a different brain.
"Many of us have had the experience of saying a child looks 'just like Uncle Harry.' In fact, he may not look anything like Uncle Harry, but his expression is exactly like Uncle Harry's. You've got all these nerves that are orchestrating your facial movement, so when we look at each other, a lot of what we see is not just that physical face but the expression that's being made."
Mr. Maki, who now lives on disability payments in a veterans' home in central Massachusetts, said he never spent any time worrying about whether he looked like his donor, and certainly never had an eerie feeling that his face belonged to someone else.
"I wouldn't even bother comparing it to how I looked before," he said. "This is my face, and it'll be my face for the rest of my life."
What is far more important to him is how other people see him.
For the years he spent with a triangular wedge of skin around the hole where his nose should have been, Mr. Maki never knew what reaction he would get in public.
"Here's an example: I was walking by a school one day behind two girls on the sidewalk and they turned around and looked at me and they screamed like they'd seen a ghost.
"A lot of kids in that age group would just do some crazy things to me. It did make me reluctant to go out."
His new face still needs more work. He has no lower teeth, and so he will get dentures on his lower jaw to build it up, and surgeons will then remove the extra tissue on his cheeks.
But it's close enough to normal, and he is well enough known from his news appearances around Boston, that adults will often approach him now to chat. "They want to say it's good you had the surgery, you look great, and they hope everything works out. You know, just chit-chat."
Children, though, are often still taken aback, he said, so he knows his face is off kilter to them.
The doctor's view
Mr. Maki's transplant surgeon, Bohdan Pomahac, is pleased with his progress, and when he heard that children still sometimes react badly, he noted that "kids can have exaggerated reactions to even minor deformities. He still doesn't look quite normal, but he looks a lot more normal."
In fact, he has even put some numbers to that. Before the transplant, Dr. Pomahac said, Mr. Maki's face was only "25 percent normal." Once he undergoes his final revisions within the next year, he said, he will be "85 to 90 percent normal."
The new dentures will create a significant improvement, he said, because without them, Mr. Maki's lower jaw sinks beneath his upper lip.
When his team did the transplant, Dr. Pomahac said, he brought over extra flesh on the cheeks, mainly because it made it easier to attach blood vessels from the bottom of the donor's face to Mr. Maki's vessels. That tissue can now be removed, he said.
When a face transplant has just been completed, the tissue is like a mask -- it doesn't move and has little feeling. It takes time for the nerves from the patient to grow into the nerve channels of the donor's tissue.
Mr. Maki's nerve regeneration has now come a long way and is likely to get even better.
Using a standard test for discriminating touch, Dr. Pomahac said that Mr. Maki can now feel that there are two separate pressure points when they are about four-tenths of an inch apart on his transplanted tissue, compared with two-tenths of an inch apart on a typical person's face.
He was able to smile six months after the surgery and now can partly pucker his upper lip.
The surge of voltage that flowed through Mr. Maki also damaged his right eye and right arm, Dr. Pomahac said.
He cannot close his right eyelids, so the surgeon sutured them partway closed so the eye would not dry out.
The movement in his right arm and hand probably won't return, he added. Mr. Maki was right-handed, so that limits his daily activities.
The arm injury is particularly sad for Mr. Maki, who was a gifted athlete.
"I'm going to tell you what I really want for the future," Mr. Maki said, "and you're going to think it's a joke. I wish I could play golf. I was always fixated on golf. The funny thing is, I know I won't be able to.
"I'm not going to go out and play one-handed or with some sort of contraption. I want to play the way I used to play, with a six handicap, and I know that's not going to happen."
Mr. Maki could taste and smell before the transplant, but now, he can also detect the temperature and texture of food in his mouth. Because he breathed through a tracheotomy and was fed through a tube into his stomach in the years after his accident, he also has had to learn how to chew and swallow again.
And there is one other oddity.
With his original face, Mr. Maki could never grow a beard. He shaved about once a week.
But Mr. Helfgot had a luxurious beard, and today, Mr. Maki has to be shaved once a day by an aide who is careful to avoid any cuts and infections in the transplanted tissue.
The man who was lost
Mr. Helfgot was an ebullient, larger-than-life sociologist who taught popular courses on sex and drugs at Boston University, and eventually parlayed his skills into doing market research for major Hollywood producers, working on films ranging from "Dances With Wolves" in 1990 to "Iron Man" in 2008.
When he and Ms. Helfgot met in the early 1980s, he wooed her by sending her an enormous pinata filled with fortune cookies stuffed with "I love you" messages, followed by a dozen roses.
He had suffered from serious heart disease for several years, and had even been on a heart transplant list once before in California before his condition improved temporarily.
At Brigham and Women's, where he was being treated for heart failure, he was known for his bursts of generosity toward the staff and for doing his work with papers spread all over his bed.
There was never any question in their minds that if the time came, Mr. Helfgot would want to donate whatever organs he could, his wife said.
But she knows that donating a face is a different matter psychologically.
Even though she and the four Helfgot children supported the donation, "the idea that someone is going to remove the face of someone you love is very difficult to get around emotionally, and you really have to push your way through that and get to the other side," she said.
When she speaks in support of face transplants around the country now, she tries to focus on the face as a functional component of the body.
"What I try to do is have people think of the human face as a biological tool. The face was not invented for the Mona Lisa painting. It wasn't made to have lots of makeup on and assuage our egos. If you can think of all the things a face has to do so you can survive -- you need to be able to breathe and get nurturance and to see where you're going -- then you can think, if you lose those, you are in serious trouble.
"People who need face transplants are not people who have had some cosmetic defect. They have suffered horrific burns or they've had a tumor and they're left a recluse who can't be seen by the public."
As an experienced reconstructive surgeon, Dr. Pomahac says that face transplants allow doctors to give patients what they never could accomplish through conventional techniques.
Particularly difficult are noses and lips, he said.
"You really can't create lips" that function as well or look as natural as the real thing, he said, and "if you have no nose, it's incredibly difficult and takes maybe a dozen operations to get a nose built."
A change of heart
When he was asked how often he thought of organ donations before his accident, Mr. Maki held up his hand and made a zero.
Today, he said, he would like to sign up as an organ donor himself.
He is also candid in talking about how the accident ended his life of rootlessness and drug abuse.
"If I hadn't had this accident," he said, "I'd still be out there using. Having the accident was a blessing in disguise for me because now I'm clean and I don't think I'll ever pick it up again."
It has also brought him closer to his daughter Jessie, a graduate student at Boston University. He and his wife, Cindy, have been separated for years.
Ms. Helfgot plans to keep on making public appearances because "we need more people to be facial donors. If we can't get people to step up to the plate, we'll have all this great surgery ability but won't be able to make it happen."
For Mr. Maki, there is hope in small changes.
"I had this little kid come up to me when I was grocery shopping recently. Kids like that normally run the other way or hide behind their parents. But he actually came up to me and said, 'I don't know what happened to you, but they must have done good.'
"I just patted him on the back."