David McDowell has become accustomed to the stares and murmurs when he goes out to the mall, or to the movies, or sits with his family on the beach.
More than 20 years after a jolt from a power line surged through his body while he was at work near Weirton, W. Va., with the Monongehela Power Co., McDowell has a badly scarred face. He's missing an ear, and he lost part of his hairline in the accident. He has undergone 28 surgeries, including numerous skin grafts and other procedures to repair his facial tissue.
"I'm still a mess," said the Elkins, W. Va., resident. "For a long time, I've been thinking I need to do something about it."
And so when he heard that doctors have received approval to perform a drastic new procedure that could give him the face of someone else, McDowell was interested.
In October, the Cleveland Clinic was the first institution to receive approval from its institutional review board to perform human facial tissue transplantation -- face transplants -- on severely disfigured patients. And doctors in Louisville, Ky., published an article in the American Journal of Bioethics last fall announcing their intention to move face transplants from the realm of speculation to clinical trials.
At the University of Pittsburgh Medical Center, doctors have been researching the surgical issues surrounding hand and face transplantation for more than 20 years, and could apply for approval to begin these transplants as early as this year.
But unlike transplants of organs such as kidneys and intestines, which are routinely performed at other centers around the world, facial-tissue transplantation raises unique questions and moral issues. The ethical quandary is so great that after reviewing the ramifications of face transplants, teams of doctors in England and France put the issue on hold indefinitely.
Side effects 'too great'
UPMC's chief of plastic surgery Dr. W.P. Andrew Lee agrees with those European ethics review boards.
"If it's not a life-sustaining organ transplant," he said, "the potential side effects are too great for the operation to be justified."
The procedure is technically a composite tissue transplant that consists of connecting small nerve and blood vessels through microsurgery. Doctors have been doing such microsurgeries since the 1970s, said Lee, but the biggest hurdle in the issue of face transplants is an immunological one: that the recipient's body would reject the new face.
Face-transplant recipients would need to take drugs to suppress their immune systems indefinitely to avoid rejection. In the long term, these drugs can cause cancer, infection and liver and kidney failure.
There's also the issue of what could happen should the immunosuppressant drugs fail. In that case, the face might have to be removed, or could actually slough off the recipient's head.
"When we make more progress -- and the patient no longer needs to take all those medications -- then it could become a reality," Lee said. "The risk-benefit balance is key here."
Some ethicists argue that this risk-and-benefit analysis should be extended to evaluate how a face transplant might affect the donor and his or her family.
"Surviving family members will be at risk of having psychological trauma because of what the donor did," said Arthur Caplan, chairman of the University of Pennsylvania's department of medical ethics.
Caplan also points out the impossibility of an open-casket funeral for a face transplant donor, and notes it might be difficult for a donor's family members to adjust to seeing their relative's face on another person. Although the recipient will not look like the donor, the appearance could be a hybrid between the two.
Caplan also is concerned about potential repercussions on the organ-donor community should this procedure move forward, since a donor technically agrees to donate all organs and tissues.
"No one intended faces when this law was written," he said, and so "you can see people tearing up donor cards all over the country" to avoid being a facial-tissue donor.
A green light on face transplants might also signal to burn victims that living with a badly scarred face is not socially acceptable, argue some ethicists. In a response to the article published in the American Journal of Bioethics, Sara Goering, of the University of Washington, argued that facial transplants might put a burden on those with disfigured faces to get a transplant or alter their appearance, instead of encouraging society to adjust to seeing a scarred face.
Goering, Caplan and other doctors and ethicists argue that until procedural safeguards are established, face transplants should not be attempted.
Still, doctors at the University of Louisville estimate that there are thousands of patients around the country whose faces are disfigured because of trauma, major burns, infections or congenital birth defects. To improve the quality of their lives, the Louisville doctors want to proceed.
While doctors at The West Pennsylvania Hospital's burn unit are able to reconstruct most badly burned faces, burn unit director Dr. Harvey Slater says there are some exceptions -- patients who lack adjacent tissue for skin grafts because of burns covering their entire face and neck. Others may lack a nose, ears or eyelids.
Patients with severe scarring and a stable state of mind would be first in line for a face transplant, Slater said. Doctors would have to determine that the transplant would improve the person's life by improving his facial appearance.
Slater has seen severely deformed patients go on to have productive and happy lives, but he understands why a patient might desire a face transplant.
"Your appearance and your personality are in some ways inseparable" he said. "It's hard to get past that." And although face transplants likely will not save anyone's life, he says they "might enable some people to have a life."
"There's a perception that we should be able to make ourselves perfect again," said Amy Acton, a burn survivor who is the executive director of the Michigan-based Phoenix Society, the largest burn survivor organization in the country. "There's a myth of what plastic surgery can do to people."
Acton would rather see more of an effort to help burn survivors re-enter society than get face transplants. But she acknowledges that some survivors struggle with depression and isolation, and have not recovered psychologically even five decades after the incident that left them scarred.
"The hope of a face transplant is an exciting possibility," she said. Acton, a former burn nurse with burn injuries to her neck, limbs and torso, still gets questions from well-meaning people who want to refer her to a good plastic surgeon.
McDowell, the West Virginia survivor, gets the questions about plastic surgery as well. But in a recent trip back to West Penn, he was told that doctors could not make any more progress in reconstructing his face. Even after 20 years, the news bothered him, and caused him to mull his other options.
"The vanity issue -- it will just wear you out if you don't have anything else to keep you occupied."