Doctor: News coverage of face transplants has helped donors’ families to consent

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This is a guest post from AHCJ member Chelsea Conaboy that first appeared in “White Coat Notes” at Boston.com.

By Chelsea Conaboy

Dr. Bohdan Pomahac and others at Brigham and Women’s Hospital in Boston grappled with lots of variables as they prepared to perform some of the first-ever face transplants. One they had little control over: Would the families of potential donors support the idea?

Overwhelmingly, families have been willing to have their loved ones’ face donated for transplant, Pomahac said Wednesday night, speaking at the inaugural event of the Boston chapter of the Association of Health Care Journalists.

Pomahac credited the media in part for the response, saying journalists’ eagerness to tell the stories of patients and what the transplant has meant for them has affected public opinion.

“People have really embraced it as something important,” he said.

Pomahac and a team of plastic and transplant surgeons at the hospital performed the first full face transplant in the United States in March 2011, about two years after doing a partial transplant on James Maki. Two other full transplants have been completed since.

Pomahac said he was “scared” of the media attention early on, having heard stories of tabloid reporters and photographers trying to sneak into hospitals in Europe where the earliest procedures were done.

Body guards were posted at the doors of patient rooms, and only those surgeons and support staff on a list were allowed near the operating room, he said. But the hospital staff also worked in advance of the surgeries to create a media plan that allowed for the stories to be told, something all four patients wanted. Each posed different challenges.

During Maki’s procedure, ABC was filming Boston Med at the hospital, so Pomahac was fitted with a microphone through parts of the preparation, a stressful period. At points, he said, he “just couldn’t stand it,”

“It added another level of intensity in this very, very tight period of time,” he said.

When Dallas Wiens was in surgery for the first full transplant in the United States, a crew from a British tabloid descended on the hospital with a document alleging it had exclusive rights to his story, he said. Wiens, who is blind, thought he had signed a form allowing the newspaper to take his photo, said Brigham spokeswoman Erin McDonough, who also attended the Wednesday event at Boston University, and the hospital worked with Wiens’ attorney to call off the crew.

Charla Nash, who had had a lot of media coverage prior to her surgery, came with an agent and attorneys who worked with the hospital communications staff.

Pomahac said he became a bit of a star in the Czech Republic, with most media outlets profiling him. He said journalists there have allowed him to read their stories for fact-checking before publishing.

“That’s something I would love to see here, actually,” he said. “I hear its not going to happen.”

Pomahac compared face transplants to the first kidney transplant, performed at the Brigham in 1954, between identical twins.

People then said, “So what?” What would the procedure mean for patients without a twin?

“It seemed like this bizarre, rare operation that, okay, we’re able to do it, but it’s unlikely to lead anywhere,” he said.

For many years, it didn’t. The development of immunosuppression drugs changed that. Similarly, if the side effects of those drugs used in face transplants can be controlled, and if insurers agree to cover the costly procedure, full or partial face transplants will become more widely used, he said.

One other limiting factor, he said, is the surgeons. Face transplants are long — Mitch Hunter’s surgery, the shortest at the Brigham, ran more than 14 hours, he said. Surgeons will become more efficient as the procedure becomes more common and they develop a better workflow, Pomahac said.

Now, he added, “everyone gets tired at the same time. Everyone works slower. But no one wants to leave” the operating room.