Gift of a face a testament to donor's enduring values

When Helfgot, 60, did not wake up after surgery at Brigham and Women's Hospital - tests later showed he had suffered a series of strokes - his family was asked a question they had never anticipated: Would they also approve the donation of his face to a man horribly disfigured in an accident?

After a brief family conference the answer was unequivocally yes. It's what he would have wanted. Thus, the stage was set for the nation's second face transplant, and New England's first.

"You wish, on so many levels, that you don't have to make this decision, but how can you deny someone else a chance at [a normal] life?" Susan Whitman, his widow, said in an interview with The Boston Globe yesterday at the family's Brookline home.

The face transplant took place on April 9; news of it broke the next morning, just as Helfgot's funeral was beginning. Most attending had no idea that just a few blocks away, medical history was being made be cause of him.

Giving permission for the face transplant "was hard, but it was so the right thing to do," said Whitman.

Helfgot had not been publicly identified before yesterday - organ donors are usually anonymous - but his family agreed to talk about his life and gifts. By sharing the story, Whitman said, she hoped to inspire others to "join him as an organ donor."

Helfgot grew up dirt poor on New York City's Lower East Side, went to college, and, by age 23, was a sociology professor at Boston University. He hosted a radio talk show on WHDH, became fascinated with market research, and in 1985 started a company, MarketCast, that today is one of Hollywood's leading research firms.

He and Whitman married in 1988 and raised four children. There was always, Whitman said, a gnawing urgency. Helfgot's father had died of a massive heart attack a month before Helfgot was bar mitzvahed at 13. His sister died of a heart attack four years ago, and Helfgot's heart was weak. By the time he was in his late 40s, doctors were talking about a possible heart transplant. Then, in 2005, he went into cardiac arrest.

After he recovered, he shared with his cardiologist a videotape of his mother describing her experiences in the Holocaust and her profound sorrow that Helfgot's father had not been there for his bar mitzvah. For Helfgot, living to see his own son's bar mitzvah became the goal.

"This was something he was driving for," said Dr. Lynne Warner Stevenson, a cardiologist at Brigham and Women's.

Helfgot reached his goal. His youngest son, Jacob, was bar mitzvahed in September and, as part of that, made organ donation awareness his community service project.

Helfgot's decision to be an organ donor - and his family's permission to include the intensely personal gift of his face - brings his life full circle, said Stevenson.

Many times, she said, she and her patient talked about the "special burden" carried by children of Holocaust survivors.

"They feel they have to make their lives bigger than life," Stevenson said, "to justify the sacrifices their parents made to survive."

For years, Helfgot's wife had paced the halls of Brigham and Women's waiting and hoping for word of a heart transplant for her husband. In retrospect, that experience gave her a greater understanding of what other potential recipients - including those who eventually received her husband's liver, face, and the donated heart he briefly held - felt.

After it was clear that Helfgot had suffered irreversible brain damage during his heart transplant, Whitman said to one of the doctors that she wished something good could come out of such sadness.

On April 7, Esther Charves, family services coordinator at the New England Organ Bank, was introduced to Whitman.

"When we met it was amazing really that at the worst time of her life she was thinking of other people and wanting to help other people," Charves said.

After a general discussion about the possibility of Helfgot being a donor - doctors still had to evaluate whether his organs would be viable - Whitman left the hospital to pick up family members who were flying in from as far away as Israel. When she returned a few hours later Charves had an unusual request.

"What I'm about to ask you may take you a little time, and I want you to feel free in stopping me at any time and that would be OK," Charves remembers saying to Whitman.

"Joseph didn't sign up for this, but if Joseph could make someone smile, to be able to breathe normally, and to chew and swallow their food, to go to a restaurant, to be a normal human being - if he could do those things, what might he say?"

Whitman acknowledges that she was startled. She thought about it and placed a conference call to her children. The family reached the unanimous decision to include Helfgot's face in the donation.

"It's easy to sign up and say you are an organ donor," Whitman said. "It's another to have your family understand and facilitate that. It's painful and it takes strength and a will to do it."

The Whitman family has not met the man who received Helfgot's nose, roof of his mouth, upper lip, facial skin, muscles, and nerves. Nor have they met those who received his liver and donated heart. But Whitman says she would like to meet the patient who received her husband's face.

Doctors say that man - the patient has not been identified - will not look like Helfgot because the recipient's underlying bone structure is different.

Helfgot, who inhaled life and loved to be at the center of things, would be thrilled at all that has transpired, especially his role in the nation's second face transplant, Whitman said.

"He would be happy to know he went out with a bang," she said. "But he's not gone, in a way. Because of it, he's still here."

Elizabeth Cooney contributed to this story. Kay Lazar can be reached at klazar@globe.com