LEAN, WITH A SQUARE JAW, BLOND HAIR AND A scruffy goatee, 16-year-old Jeffrey Hunt is a picture of wide-eyed adolescence, His room on the third floor of the Washington house where he lives with his parents, CNN prime anchor Judy Woodruff and Wall Street Journal executive Washington editor Al Hunt, is a "natural disaster area," says his father. Like teenagers' bedrooms everywhere, it displays the passions of the young man who inhabits it: alternative rock, mountain biking and especially skiing. On the door, underneath a sign reading "Biohazard," is a list of the expert slopes he has conquered at Vail—Blue Ox, Bolshoi Ballroom and Shangri-la. Jeffrey especially enjoys racing his father, and the feeling is reciprocated. "I'm competitive," admits Hunt, 54. "But the first time he beat me on the ski slope—that's the happiest I've ever been."

Hunt's joy transcends mere paternal pride: It springs from his wrenchingly intimate knowledge of the afflictions that have colored every day of his son's life. Jeffrey Hunt has spina bifida, a serious birth defect in which the incompletely formed spinal cord protrudes outside the body and wreaks physiological havoc. Until the early 1950s, spina bifida patients rarely survived infancy. Today they can live long lives, but often with symptoms such as paralysis, incontinence and learning disabilities. Jeffrey's case, which occurred in the lower spine, was relatively mild. And thanks to postnatal surgery, therapy and medication, he is active and intelligent, with a love of science and dreams of a future in medical research. "It's so much better than we ever would have dreamed," Hunt says of his son's condition.

But Jeffrey's life is also a struggle. "It's like one of those 5,000-piece puzzles," explains Woodruff, 50. "Every year a few more pieces are provided to you, and you've got to figure out where they go." Like many with spina bifida, Jeffrey was also born with hydrocephalus—excess cerebrospinal fluid in the cavities of his brain. To prevent continuing fluid buildup and pressure on the brain, he carries inside him a straw-like shunt, surgically inserted to drain fluid from the head to the abdomen. Because of neural damage to his spine, Jeffrey can't fully push off with his feet or completely straighten his knees. Consequently his gait is awkward and he runs slowly, which keeps him out of team sports. Additionally, he can have difficulty, as most spina bifida patients do, with bladder and bowel control, a problem treated with medication.

Jeffrey is speaking publicly about his problem for the first time, he says, to help others. "My situation is a very mild form of spina bifida," Jeffrey explains, "but there are a lot of people who have much more serious levels of it. I want to get them attention."

"Spina bifida is the most common permanently disabling birth defect in this country," adds Woodruff of the disorder, which occurs in roughly one of every 2,500 births. "And yet there's still so little known about it." Since 1989 she and Hunt have worked with the Spina Bifida Association of America to run an annual fund-raiser, shown live on C-Span, in which politicians roast a prominent journalist ("a reversal of the natural order of things in Washington," Hunt points out). This year's roastee, NBC correspondent Andrea Mitchell—Woodruff's friend and the wife of Federal Reserve Chairman Alan Greenspan—was slated for skewering Oct. 28. "Jeffrey's such a special part of our lives," Mitchell says. "He's smart and funny and brave." Adds Jeffrey's godfather, columnist and CNN Capital Gang pundit Mark Shields, who emcees the roasts: "He's just a very real, good, delightful person who happens to have spina bifida."

The roasts, according to Mary Corcoran Knoll, coordinator of the ninth annual fund-raiser to benefit the Spina Bifida Association of America, have achieved their goal. "Ten years ago, I bet you one out of 100 people knew what spina bifida was," she says. "Now when you say it, eyebrows raise and people say, 'I know, of course.' " Vast progress has also been made on the medical front. "I think we've come a long way," says Jeffrey's physician Dr. Catherine Shaer of the Children's National Medical Center in Washington. "There are newer surgeries for orthopedic problems and newer things to help patients with continence." The biggest breakthrough is research showing that neural tube defects such as spina bifida can be prevented in up to 75 percent of the cases with daily supplements of the B vitamin folic acid during childbearing years. "Anytime you're invited to a wedding," says Godfrey Oakley of the Centers for Disease Control in Atlanta, "give the bride a year's supply of folic acid."

The role of folic acid was unknown in 1981, when Woodruff, then NBC White House correspondent, was expecting her first child. She'd had an uneventful pregnancy until her eighth month, when a routine sonogram was taken. When the clinicians returned, "they said, 'There's something we think you should know,' " she remembers. Told that her baby appeared to have hydrocephalus and was at risk for spina bifida, she and Hunt, who knew little of either disorder, "were scared to death," she says. Though they didn't panic, and started to read up on spina bifida, Woodruff adds, "we were carrying this huge thing in our heads and hearts."

Jeffrey was born just before 3 a.m. on Sept. 16, 1981. "We heard the cry, so we knew that he was fine from that standpoint," says his mother. "He was 6 lbs. 3 ozs., and he had nice pink cheeks." But minutes later her husband learned the harsh truth; before breaking the news to Woodruff, he worked up his resolve. "It was a rainy night, and I drove to the 7-Eleven and bought a pack of cigarettes," says Hunt, now an ex-smoker, "and walked around and cried for about half an hour. Then I came back and said, 'We're not going to accept the fact that this is a kid who's not going to have a real shot in life.' " Jeffrey immediately underwent a delicate two-hour operation in which the late pediatric neurosurgeon Dr. David McCullough restored the exposed section of spine to its proper niche inside the infant's body.

There were, of course, no assurances. "You envision your life together with a child and the child growing up," Woodruff says, and then "that picture suddenly gets really muddy and murky. What kind of a life is this child going to have?" Jeffrey's first months were trouble-free, but eventually his hydrocephalus became apparent, though his mother and father admit they were in denial. "Once in a while somebody would say, 'Oh, what a big head,' when they saw Jeffrey," Hunt recalls. "And we'd say, 'What big head?' We were with him all the time, and we just didn't want to believe he needed a shunt—it sounded like major brain surgery. Who would want that for their child?" At 10 months, Jeffrey had the operation.

But there were also joyous times. Woodruff was "thrilled"—not to mention relieved—when Jeffrey took his first steps in the fall of 1982, even though she got the news in California where she was covering Jerry Brown's unsuccessful campaign for the U.S. Senate. Indeed, the boy was developing normally enough that both Woodruff and Hunt felt free to pursue their careers. "If they had told me it was such a severe situation, I would have thought about quitting," says Woodruff, who hired a nanny. "They never made that stark a pronouncement, and Al and I were fortunate that we had the wherewithal to afford good care." She moved from NBC to a 10-year stint on PBS with the MacNeil/Lehrer NewsHour and her own show Frontline before going to CNN in 1993. Hunt rose through the ranks at the Journal and proved to be an adept talking head himself—primarily as a panelist on The Capital Gang. Though wary of having another biological child, they had a son, Ben, now 10 and healthy. In 1989 they adopted a daughter from Korea, Lauren, now 8.

Until deciding recently to speak out, Jeffrey had been understandably discreet about his condition—which is not immediately apparent to the untrained eye—among his schoolmates. To be sure, he has met with hurtful comments. But most peers regard him admiringly—among them the football team at Sidwell Friends School, which he attended until last year, serving as the team's manager. "At the final football dinner, we gave him a standing ovation," says ex-Sidwell gridder Matthew McCulloch, 18. Adds Noah Waxman, 16, Hunt's neighbor and best friend: "Respect is not something Jeffrey lacks."

But nowhere does Jeffrey Hunt have stauncher fans than at home. "He lives this thing day in, day out, and nobody can really know what he goes through unless you walk in those shoes," says Woodruff. "He truly is the most courageous person I know."

RICHARD JEROME
MARGIE SELLINGER in Washington

  • Contributors:
  • Margie Sellinger.