Doctors will transplant a face – but whose?

Landmark surgery raises big questions

While doctors in France and China are making headlines with partial face transplants, the American team that have been screening disfigured candidates for the past 19 months still hopes to make history. Doctors, psychiatrists and ethicists at the Cleveland Clinic are poised to perform the world’s first full-face transplant, removing an entire face, both ears and a full head of hair from a brain-dead donor and attaching them in one piece to a recipient who will be left with few visible signs other than a few scars on the neck. They’ve been gearing up since November 2004, when the clinic became the first US medical facility to be approved for such a procedure by its Institutional Review Board – an internal panel that oversees biomedical research involving human subjects. And while the clinic still appears to be the US front-runner, the team leader and surgeon who will perform the transplant, acknowledges that it could take place tomorrow or not in her lifetime.

Why is it taking so long? Doctors and ethicists say the perfect candidate for the risky procedure has eluded them. And there’s the challenge of finding a donor as the team deals with a national transplant system that has no specific provisions for this surgery. The story of a local resident who has emerged as a de facto spokeswoman for people with severe facial trauma, highlights the painstaking nature of the selection process. When she heard the clinic was preparing to perform a face transplant, she called to request a new face. It was like her prayers were answered. She always believed it could happen. But she soon learned that she would not be a candidate. The medical team is looking for someone more disfigured than her, who has had dozens of operations to repair burns she suffered in a 1989 natural-gas explosion in her home. She is a 39-year-old mother of three, now looks good enough to shop for her family and go to work. She still does not look like herself, but the progress she made is definitely remarkable. It has been years since she heard a stranger call her a "monster".

There are no statistics on how many people are hidden from view because their faces are badly disfigured by fire, trauma or disease. And it is very difficult to find people, who are willing to speak to a reporter and be photographed. She is one of the few who has been quoted in news articles on this subject. The Cleveland Clinic experts say they are looking for someone who has run out of conventional surgical options, someone whose life has been ruined by the disfigurement. The candidates also are evaluated to see if they are psychologically strong, competent enough to fully understand the risks and committed enough to comply with a lifetime of complex medical regimens. The outcome is so uncertain, they say, that the recipient has to be willing to risk death. Would they trade their life or part of their life if worst comes to worst? Maybe this is their last chance procedure.

The surgery

In her basement laboratory, the surgical team study blood flowing through tiny vessels under microscopes. They are documenting what happens when the blood supply is cut off, as it will be as the face is removed from a donor for transplantation. The doctors practice by transplanting the limbs, ears and faces or rats. They push the boundaries of tissue rejection, and they count the minutes it takes to remove a face from a cadaver (235 minutes) and then attach to it to another cadaver (22 minutes). The face transplants on cadavers were the final steps in their preparations, although the team knows that surgery on a live person will take much longer. Surgeons in France and China have replaced parts of human faces torn away by animals – a bear in China and a dog in France. Patient(x), who received a new nose, chin and mouth in November, appears on ABC’s primetime. Surgeons in China gave farmer patient(y) apparently a nose, upper lip, cheek and eyebrow in April. But the Cleveland team says it has devised a procedure to transplant everything from the neck up. The potential benefits of transplanting the entire face, ears and a full head of hair came from keeping nerves and blood vessels intact.

Doctors hope that the recipient could someday blush at a compliment and feel a butterfly kiss. But that’s a big unknown. Doctors don’t know for sure how a full face will function after being transplanted. Likewise, it could be years before the medical community learns how the partial transplants in France and China function. The Cleveland team will connect sensory nerves, but the return of sensation will not happen overnight, because the nerves need time to regenerate. The risks are huge. If the body rejects the face – and the body attacks transplanted skin more viciously than an internal organ such as a kidney – the surgeons might have to take it off, leaving nerves and blood vessels exposed. The bottom line is we want to help patients, but sometimes this may not work. A recipient must have enough healthy skin elsewhere on the body to accommodate what the team calls the "rescue protocol". If the transplanted face has to be removed skin grafts from the other parts of the body would be used to cover the exposed muscles and bones. Doctors hope to force the body to accept the new face by using drugs with possible side effects that include cancer and death. But they have no idea how they’re fare in fighting rejection. When the procedure is finished, we will know if everything went OK in terms of technical aspects. Then we need much more time to know if this graft will work a lot of time.

The recipient

The public biggest misunderstanding about face transplants – that it’s a form of identity swapping – can be blamed on Hollywood. The best known face transplants on the big screen may be those seen in 1997’s Face Off, starring John Travolta and Nicolas Cage, in which a government agent swaps faces with a terrorist. Doctors expect a different reality. While nobody knows for sure, computer models, cadaver experiments and past experience with facial reconstruction surgeries lead doctors to believe that because the bones beneath will be different. The donated face will look different. Chairman of the clinic’s bioethics department, says the team wants to ensure the donor family doesn’t have false expectations or hopes that their loved one will reappear on the face of the recipient. The science suggests there will be very little, if any, resemblance. The other concept which should be emphasized again and again is that this is not for vanity. This is for people who are otherwise suffering. This is for people who want to look normal. They want to walk on the streets without people staring at them. Team members say that by viewing often gruesome pictures and dissecting extensive medical records, they are narrowing the field to determine who should be the first to get a new face. Critics, such as, director of the Center for Bioethics at the University of Pennsylvania in Philadelphia, question whether somebody who has been forced to hide from public view because of severe disfigurement can adequately weigh the risks, some of them unknown, against theoretical benefits. The selection process is being overseen by Cleveland Clinic’s Institutional Review Board, made up of surgeons, psychiatrists, social workers, therapists, nurses and patient advocates, which is in place to protect the welfare of human test subjects. The boards’ oversight ensures that the procedure will be done ethically. A national review board would be better for high-profile cases. The institution has a conflict of interest. It’s glory. It’s fame. Forget money – it’s just visibility. The local team protects the recipient. This is a team decision by people who do not want to cause harm.

It’s the person’s right to decide, if they fit into the protocol, to take the risks as presented. What is important for their life? Finding a donor after the first recipient has been chosen, team members say, may become the biggest obstacle in their path. The team will work with organ procurement experts to find a potential donor who is the same race and gender as the recipient. The first face would most likely be taken from a person declared brain-dead who had once talked with his or her family about organ donation. Some people are donating only organs. Some people donated their whole body. And some people donated top tissues like skin. We want to make sure there is no surprise. The family will be informed and will have a right to make the decision. But there is much work to do with donation advocates to develop protocols for recovering faces. Expresses concern that confusion over face donations could keep people from signing donor cards, posing a threat to the lives of those waiting for organs. Questions arise like: "Are you going to add that to the donor card? Are you going to say that if you don’t say anything and the family wants to donate your face they can? It’s a fragile system. Many people will become nervous. We don’t want anybody tearing up their donor card because they worry about this.

The right time

To go so fast with something that is so important might mean questions about things were not taken into consideration. This is a learning and teaching experience for all of us, the face is a vital organ in terms of social interaction and personal relationships, but there is no timing issue where somebody is going to die if they have a face transplant in June instead of April. It takes a different view. We don’t know how many people are out there hiding, recalling a time when she wanted to take her own life. This was life threatening. I became a threat to myself. When patient fund her home full of gas in 1989, she says, she ran in to wake her husband. When the gas exploded, it burned them both – her more severely than him. When she first saw her face in a mirror in the hospital, she was shocked. Her toddler daughter refused to go near her at first. Surgeries slowly and painfully patched an unfamiliar face together using skin from other parts of her body. But rebuilding wore her down. When you think things are hopeless, that is when things become deadly. What did I have to look forward to? Society didn’t exactly treat me kind. Now she plays in the park with her kids. She works in an insurance company call center. And she waits to make progress so that one day she might be considered eligible for a face transplant. People talk about them playing God. But they are listening to God, because they know this was a prayer that they sent up.