A Mighty Heart
12/21/2009 at 01:00 AM EST
Lizzy Craze sat in a Palo Alto, Calif., bar, enjoying burgers with her pals under balloons bearing the number 25. When strangers wished her a happy birthday, she didn't bother to correct them. "Well," says Lizzy, who turns 28 in December, "for part of me it was a birthday."
Many happy returns, Lizzy's heart. On Oct. 8, 1984, Lizzy, just 2 years and 10 months old, made medical history as one of the first toddlers to undergo a successful transplant of that vital organ. She's also the longest-surviving pediatric patient. Says Lizzy, a computer specialist for Facebook who lives in Mountain View, Calif.: "I feel triumphant."
Sharing her victory are parents Charles and Susan Craze, who lost three children to heart failure before Lizzy was born. Both lawyers, the Crazes were living in Cleveland in the late 1960s, when firstborn Charles Jr. died at 19 months. After a second, apparently healthy, son, Andy, came twin girls, Caitlin and Megan; they succumbed before their fourth birthdays. "I asked my doctor, 'Do you believe in God?'" recalls Susan, 66, who at times battled suicidal thoughts and even traveled to Lourdes, France, in search of a miracle.
The children suffered from familial dilated cardiomyopathy, a genetic disorder that causes an enlargement and weakening of the heart. The Crazes mourned their losses and gave up their dream of a big family. Then in 1981, at the age of 38, Susan discovered she was pregnant. Praying for a healthy child, she gave birth to Lizzy, but an x-ray at 4 months revealed a malfunctioning heart. "We were devastated," Susan recalls. Their panic grew after Andy, born with a milder form of the condition and until then symptom-free, was diagnosed with heart failure at 16 and given 6 months to live.
By then, however, medical advances offered new hope to kids with ailing hearts (see box). Susan's brother-in-law, a doctor, pointed the Crazes to surgeon Norman Shumway, whose team at Stanford Hospital was achieving unusual success with heart transplants in younger patients. "If it weren't for Dr. Shumway and his team," Susan says of the surgeon, who died in 2006, "we'd have no children." On July 10, 1983, Andy received the heart of a young male adult donor.
But Lizzy presented a special challenge. Because she was so young, she needed a tiny heart, so Shumway's team went on local radio shows to publicize her plight. Weeks later a donor was found: a 2-year-old Utah girl who had died in a car accident. Dr. Phil Oyer, a member of Shumway's team, placed that heart in Lizzy's chest cavity, hoping it might last the then-standard five years. "Making it to 25?" he says. "It's a bit of a miracle."
It's also a tribute to a young woman her mom describes as "one tough kid." After a month in the hospital, Lizzy returned home, sustained by a cocktail of antirejection drugs and repeated viewings of The Wizard of Oz. Growing up, she took dance lessons and played neighborhood baseball, rolling her eyes when her anxious mom would rush her to the doctor for every fever. At 15, she needed a kidney transplant—the anti-rejection medication had destroyed hers—so dad Charlie donated one of his. On prom night she proudly displayed part of her nine-inch chest scar in a strapless dress.
These days Lizzy juggles work, kickboxing, law classes and her favorite video game, The Beatles: Rock Band, which she plays with boyfriend Jeff Gibboney, 30. Doctors expect she'll need another transplant someday, but Lizzy says she'll cross that bridge when she gets to it—a point she stresses to other young patients and their families. "Life is too short to worry about my heart," she says. "I experience all I can. And I'm not slowing down."