JRI IN THE NEWS

 

September 1999

The Redford Family's Private Crisis
by Carrie St. Michel

Reprinted with permission granted by Good Housekeeping

I remember waking up, and my entire family was standing in a semicircle around my hospital bed, holding hands.I will never forget it,” says Jamie Redford. “In that instant, I realized the power of family—the power of family love.”

 It could have been one of those perfectly scripted movie moments that the patient’s father plays so well. This, however, was no film set. On March 15, 1993, a painfully real drama was unfolding in the private lives of Hollywood legend Robert Redford and his family. The Redfords’ son, Jamie, was fighting for his life, following sudden surgery to replace his liver.

 At Jamie’s bedside were his father, mother Lola Van Wagenen, sisters Shauna and Amy, and wife Kyle, engulfing him with love and support, just as they had through years of illness that began when he was 15. Now, at 30, he had just returned from the brink of death.

 Unfortunately, that first transplant was not the success doctors had hoped for; Jamie would have many more medical battles to fight. The long ordeal eventually led to a filmmaking effort of his own. Last year, the younger Redford completed The Kindness of Strangers, a gripping feature-length documentary exploring the miraculous, complex world of organ donation. It airs this month on HBO.

 In a pleasant outdoor cafe near his Marin County, CA, home, Jamie, now 37, nervously readjusts his well-worn Sundance baseball cap as he recalls the struggle that spanned two decades of his life. It is a story few people know about, even though it began when his father was at the height of movie superstardom. The Redfords purposely shielded their children from the Hollywood spotlight, raising them in New York City and Sundance, UT.

 Jamie was in the tenth grade when he first came down with what appeared to be a particularly acute case of stomach flu. There were grueling attacks of cramps, chills, fevers, and fatigue.

Throughout high school, Jamie would periodically feel well enough to hit the ski slopes, play guitar in a local rock band, and live like a normal teenager. Then the mysterious illness would reappear.

 Robert and Lola Redford, who married in 1959, had already endured one terrible tragedy, losing their first child, Scott, to sudden infant death syndrome when he was just 3 months old. They resolved that they would not lose Jamie. They went from doctor to doctor, until finally, in 1980, their son’s condition was diagnosed as ulcerative colitis—a chronic inflammatory disease of the large intestine that slowly destroys the colon.

 Amid bouts of internal bleeding, rapid weight loss, and scorching fevers, Jamie managed to complete a bachelor’s degree at the University of Colorado. Then, in 1987, he received a new, far more deadly diagnosis: primary sclerosing cholangitis (PSC)—a rare complication of ulcerative colitis that blocks the liver’s bile ducts. “They told me my liver would fail within five to ten years,” Jamie remembers.

 Only 25 at the time, Jamie reacted with a healthy dose of denial. “I decided it wouldn’t get me,” he says. “They’d come up with a cure.” His parents were less laissez-faire and immediately rushed to their son’s aid. “They offered to fly me anywhere to get the right care and guided me to anything that could be of help,” says Jamie. Though the Redfords had divorced two years earlier, in 1985, their son’s illness overruled any tensions between the two. “You’re always going to be parents to the same children,” Lola has said. “Through all of this with Jamie, Bob and I really leaned on each other for a lot of emotional support.”

 Jamie, though, had something other than medical care on his mind. Two months after the PSC pronouncement, he proposed to Kyle Smith, whom he’d met at college. Without hesitation, she said yes, a fact that still amazes Jamie. “It never occurred to her what she was getting into,” he observes. “Our lives were just one—what was happening to me was happening to her.”

 By 1989, Jamie was experiencing excruciating abdominal pains, “curled-up-on-the-ground kind of pains,” as he puts it. In 1991, doctors said a “transplant would be needed sooner rather than later.” By now the stakes had grown even higher. Jamie had become a father: Son Dylan was born that same year. (Now Jamie and Kyle also have a 3-year-old daughter, Lena.)

 Jamie’s condition continued to decline, and by January 1993, he was essentially living at the University of Nebraska Medical Center, under the care of Byers W. Shaw, Jr., M.D., one of the nation’s leading transplant surgeons. As he waited for a liver, infections were sweeping through Jamie’s body, and jaundice had literally turned the young man’s skin and eyes yellow—another sure sign of impending liver failure.

 Jamie was in his room watching TV when the call finally came. “I have good news for you,” said the transplant coordinator. “We found a liver.” In a state of shock, Jamie called his dad, who was in New York City preparing to shoot the movie Quiz Show. “I woke him up in the middle of the night,” recalls Jamie. “He shut down production and got on a plane.”

 By 6:00 a.m. the next day, Jamie’s liver-transplant surgery was under way. Afterward, he awoke to the human chain formed by his family. The love that encircled him was unforgettable, but so too was the fact that his second chance at life was dependent upon someone else’s death—in this case, a 29-year-old man who had suffered a brain aneurysm.

 “There’s a constant darkness around it,” Jamie says of organ donations. “You know that your transplant involves someone else’s death.” But he has come to accept that “whatever the donor’s path in life, their fate isn’t tied to yours. It took me a while to recognize that my need for a transplant wasn’t going to cause someone else to die.”

 Initially, Jamie appeared to be making a remarkable recovery. But seven days after the operation, an ultrasound showed a blood clot had formed on the donated organ. Although doctors repaired the liver as best they could, the prognosis wasn’t good: It was just a matter of time before the new organ would fail.

 Less than two months later, Jamie was back in the hospital full-time waiting for another transplant, again fighting high fevers and rampant infections. Each day his need for another liver grew more critical. “I was really starting to deteriorate,” he says. “I had a sense that things were closing in on me.”

Among the few bright spots during this desperate period were the visits from his mom and dad. Robert Redford, who had begun directing Quiz Show following Jamie’s first transplant, told his son, “I can do this movie next year—I can completely shut it down.” Jamie declined the offer, not wanting to disrupt the lives of so many people. What Robert Redford did instead speaks volumes about the bond between father and son—and the stalwart determination they share. Every week, after long days of shooting Monday through Saturday afternoon, Redford would catch a flight and be at his son’s bedside in Omaha by Saturday evening. The two would spend the weekends watching rough cuts of the film and enjoying each other’s company. Come Monday, Redford would fly back. “I really came to rely on this,” Jamie recalls.

Jamie’s mother, who at the time was completing her Ph.D. in American history, was also a constant presence. Although a dissertation deadline loomed, Lola left New York University, dividing her time between watching over her ailing son and baby-sitting grandson Dylan, while squeezing in work on her doctorate.

 As the weeks wore on, Jamie teetered on the edge of total liver failure. If an organ did not become available soon, the outcome would most assuredly be fatal. “I became very anxious,” he says. “I really felt like the clock was ticking.”

 As did Jamie’s wife, Kyle, an eighth-grade history teacher. Sitting by her husband’s bedside on July 6, 1993, she wished aloud that her birthday—July 7—would bring with it the ultimate gift: the gift of life for her husband.

 Wishes can come true.

 The next morning, an exhausted, disheveled transplant coordinator was at Jamie’s bedside. “Well, today’s your day,” he said. The man had just returned from an overnight flight to retrieve a donated liver. This time, the transplant took. The organ, which was donated by the family of a 19-year-old male who died from severe head trauma, functioned well enough for Jamie to be discharged less than two weeks after the operation. Although he will have to take antirejection medication for the rest of his life, his long-term prognosis is very good.

 When he returned home, Jamie wrote letters of gratitude to both donor families. Each word was a struggle. “I told them that I was going to do my best to honor their gift and live my life as well as I could,” he says. “I wrote that I hoped they understood they saved a son from growing up without a father, and a loving wife from being a widow.”

 Two years after the surgery, he established the James Redford Institute for Transplant Awareness, a nonprofit organization dedicated to educating the public about the urgent need for organ and tissue donations and addressing concerns that people have about becoming donors. (More than 60,000 patients nationwide currently await transplants, and it’s estimated that each day 12 will die because of a lack of available organs.)

The institute’s most ambitious undertaking is the docume ntary The Kindness of Strangers. Beautifully shot and deeply moving, the film interweaves the stories of four transplant patients with those of two families who donated the organs of lost loved ones. After viewing the film at a Chicago screening, Robert Redford turned to his son and said, “My God, this has to be seen.”

Jamie hopes that many people will see The Kindness of Strangers, noting that he will never forget the kindness of those strangers who saved his life and forever changed his outlook. “There’s not a day that goes by,” he says, “that I don’t find something to enjoy. My appreciation for the love of my family—my love for my kids—is never far away. The things that really matter, matter that much more.”            —Carrie St. Michel

left and above archive photos, right photo Ken Regan/CAMERA 5

Copyright: Good Housekeeping Magazine

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