The decision to donate her husband’s face to a man she’d never met in need of one was not done lightly by Susan Whitman. In the space of three excruciating, exhiliarating days, Whitman learned that a donor heart was available for her husband, Joseph Helfgot, who had been waiting for one for more than a year. She then learned that he had not survived the transplant surgery, that there was a request to consider organ donation and finally the decision to donate Helfgot’s face to a man who’d been suffering for several years following an industrial accident.
Whitman agreed to discuss the unusual experience in an effort to illuminate the process for a procedure that is still new in America. The successful transplant at Brigham and Women’s Hospital was only the second in the United States.
Helfgot was a prominent Hollywood market researcher, founder and president of the research company, MarketCast.
How did this decision come about?
We’d already been on board for being a donor family. And it was pretty obvious going into surgery -- you don’t spend time talking about a worst-case scenario -- but I already knew that if something went wrong, something -- a liver or kidney or something -- would be donated. But there is a difference between donating an internal organ and giving someone’s face. It’s very different.
It is a very profound decision. Can you share your thought process?
When you are stricken with grief at the loss of another and you can give someone else life, it really eases the grief.
Esther Charves from the New England Organ Bank approached us to reinforce the fact that we’d agreed to be a donor. She said, ‘It’s very possible that the heart transplanted into Joseph would be recovered,’ and that would be the first time that would happen.
She only approached you later about the possible facial transplant?
Esther broached it with me on Tuesday. She pulled me aside yet again. She said, "I have another thing to ask you, and don’t think you have to say yes to this. This is a big one." She said she felt comfortable approaching me because she knew I was, unlike other folks, familiar with organ donation. And this was a person who had been waiting for a while. That suggested to me that this was uncharted territory.
It was heavy. I said, "I need to speak to my children." I rounded (them) up, and we talked about it.
It was so fundamentally difficult, and yet fundamentally easy. I felt the way you do when your kids are little and are about to get a tetanus shot: "You know how painful this is going to be, and you won’t understand it on a certain level, but it’s something you have to do."
