Doctors will transplant a face – but whose?

(Conclusion)

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 board’s 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. Expressed 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 found 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.