Face Transplant Plan Stirs Hopes, Doubts

CLEVELAND —  In the next few weeks, five men and seven women will secretly visit the Cleveland Clinic to interview for the chance to have a radical operation that’s never been tried.

They will smile, raise their eyebrows, close their eyes, open their mouths. Dr. Maria Siemionow will study their cheekbones, lips and noses. She will ask what they hope to gain and what they most fear.

Then she will ask, “Are you afraid that you will look like another person?”

Because whoever she chooses will endure the ultimate identity crisis.

Siemionow wants to attempt a face transplant.

This is no extreme TV makeover. It is a medical frontier being explored by a doctor who wants the public to understand what she is attempting: to give people horribly disfigured by burns, accidents or other tragedies a chance at a new life.

Today’s best treatments still leave freakish, scar-tissue masks that don’t look or move like natural skin. These people have lost the sense of identity that is linked to the face; the transplant is merely “taking a skin envelope” and slipping their identity inside, Siemionow contends.

Her supporters note her experience, planning, the experts she has assembled to help, and the practice she has done on animals and cadavers.

But her critics say the operation is too risky for a condition that is not life-threatening, as most organ transplants are. They paint the frighteningly surreal image of a worst-case scenario: a transplanted face being rejected and sloughing away, leaving the patient worse off.

Such qualms recently scuttled face transplant plans in France and England.

Ultimately, it comes to this: a hospital, a doctor and a patient willing to try. The first two are in place; the third is expected to be shortly.

The “consent form” says that this surgery is so novel and its risks so unknown that doctors don’t think informed consent is possible. Here is what it tells potential patients:

Your face will be removed and replaced with one donated from a cadaver, matched for tissue type, age, sex and skin color. Surgery should last 8 to 10 hours; the hospital stay, 10 to 14 days.

Complications could include infections that turn your new face black and require a second transplant or reconstruction with skin grafts. Drugs to prevent rejection will be needed lifelong, raising the risk of kidney damage and cancer.

After the transplant you might feel remorse, disappointment, grief or guilt toward the donor. The clinic will try to shield your identity, but the media probably will discover it.

The clinic will cover costs for the first patient; nothing about others has been decided.

Another form tells donor families that the person receiving the face will not resemble their dead loved one. The recipient should look similar to how he or she did before the injury because the new skin goes on existing bone and muscle, which give a face its shape.

Research suggests the result will be a combination of the two appearances.

It took more than a year to win approval from the 13-member Institutional Review Board, the clinic’s gatekeeper of research. Siemionow assembled surgeons, psychiatrists, social workers, therapists, nurses and patient advocates, and worked with LifeBanc, the organ procurement agency she expected would help obtain a face.

At first, there was opposition, acknowledged the board’s vice chairman, Dr. Alan E. Lichtin. After months of debate, Siemionow brought in photographs of potential patients.

Looking at the contorted images, Lichtin said he was struck by “the failure of the present state of the art to help these people.” He decided he didn’t want to deprive the surgeon or patients of the chance.

The board’s decision didn’t have to be unanimous, but it was.

Surgeons wished they could have done a transplant six years ago, when a 2-year-old boy attacked by a pit bull was brought to the University of Texas in Dallas, where Dr. Karol A. Gutowski was training.

Other doctors had tried to reattach part of the boy’s mauled face but it didn’t take. The Texas surgeons did five skin grafts in a bloody, 28-hour surgery. Muscles from the boy’s thigh were moved around his mouth. Part of his abdomen became the lower part of his face. Two forearm sections became lips and mouth.

Surviving such wounds can be “life by 1,000 cuts.” Patients endure dozens of operations to graft skin from their backs, arms, buttocks and legs. Only small amounts can be taken at a time because of bleeding.

Surgeons often return to the same areas every few weeks, reopening old wounds and building up skin. Years later, many patients are still having surgeries. A face transplant -- applying a sheet of skin in one operation -- could be a solution.

Despite its shock factor, it involves routine microsurgery. One or two pairs of veins and arteries on either side of the face would be connected from the donor tissue to the recipient. About 20 nerve endings would be stitched together to try to restore sensation and movement. Tiny sutures would anchor the new tissue to the recipient’s scalp and neck, and areas around the eyes, nose and mouth.

“For 10 years now, it could have been done,” said Dr. John H. Barker, director of plastic surgery research at the University of Louisville, where the first hand transplant in the United States was performed in 1999.

Several years ago, these doctors announced their intent to do face transplants, but no hospital agreed. They also were working with doctors in the Netherlands; nothing was imminent.

But Siemionow had been doing experimental groundwork. She had creatures that resembled raccoons in reverse -- white rats with masks of dark fur -- from years of face transplant experiments. She developed a plan and won clinic approval before going public, but said she was not competing to do the first case.

Siemionow, 55, went to medical school in Poland, trained in Europe and the United States, and has done thousands of surgeries in nearly 30 years. The success of this one depends on picking the right patient.

She wants a clear-cut first case. No children because risks are too great. No cancer patients because anti-rejection drugs raise the risk of recurrence.

“You want to choose patients who are really disfigured, not someone who has a little scar,” yet with enough healthy skin for traditional grafts if the transplant fails, she said.

The person must bond with the transplant team, especially Siemionow.

Dr. Joseph A. Locala will decide whether candidates are mentally fit. His chief concern: ensuring they realize the risks.

“They almost need to understand as much as the surgeon,” he said.

A psychiatrist who has worked with transplant patients for 11 years, Locala knows they often have been coached on what to say to be chosen. He’d veto candidates who had abused alcohol or drugs because they might not take medications as prescribed.

Likewise, someone who had attempted or threatened suicide, or with little family or friends for support, would be rejected.

“I’m looking for a psychologically strong person. We want people who are going to make it through,” he said.

Matthew Teffeteller might seem an ideal candidate.

Hair is driving him crazy. What used to be a beard can’t grow through the skin-graft quilt that Vanderbilt University doctors stitched over parts of his face that were seared off in a car crash. Hair follicles fester, leading to staph infections, pain and more surgeries.

“It’s a nightmare and it never ends,” he said. “Being burned is the worst thing that can happen to you. I’m about sure of it.”

Teffeteller, 26, lives south of Knoxville, in the foothills of Great Smoky Mountains National Park where he worked, ironically, as a firefighter. The day after Valentine’s Day in 2002, he was taking his pregnant wife to buy a cowboy hat and go country line dancing to celebrate their first anniversary.

“The next thing I remember, everything just went all to pieces ... there was a big explosion. I remember seeing gas splash off of the windshield,” he said.

Rear-ended by a truck, his car flipped and caught fire. His wife died. He was burned trying to free her.

“They said my face was charcoal black,” he said.

He didn’t see it for two months, until he glimpsed a mirror on his way to therapy.

“Oh, my God,” he thought. “I remember seeing my eyes pulled open. I remember my ears were burned off, and I remember my bottom lip being pulled down.”

Three years later, his face still frightens children. Yet he wouldn’t try a transplant.

“Having somebody else’s face ... that wouldn’t be right. When I look in the mirror, I might be scarred but I can still tell that it’s me,” he said.

Bioethicist Carson Strong at the University of Tennessee has doubts about the procedure.

“It would leave the patient with an extensive facial wound with potentially serious physical and psychological consequences,” he wrote in the American Journal of Bioethics.

Such worries led the Royal College of Surgeons in England and the French National Ethics Advisory Committee to decide it shouldn’t be tried. Any doctor considering it should examine soul and conscience, Strong wrote.

Ironically, people most emotionally devastated by disfigurement are those most likely to seek a transplant and least able to cope with uncertain results, media attention and loss of privacy, ethicists from England wrote in the same journal.

Siemionow said critics should acknowledge that risks and need for the transplant are debatable.

“Really, who has the right to decide about the patient’s quality of life?” she asked. “It’s very important not to kind of scare society.... We will do our best to help the patient.”