One Giant Leap
09/02/2002 at 01:00 AM EDT
On New Year's Eve of 2001, Leann and Kevin Hill were in their Troy, Ill., living room, anxiously hovering as Jessica, their only child, seemed ready to crawl for the first time. "I told her, 'Jessie, let me show you,' " Leann recalls. "I got down on my hands and knees and let her watch how I moved my legs and arms." At that, she says, Jessica suddenly "popped up and did it," making her way across the room. "She looked like a little newborn cat," recalls her beaming grandmother Maureen De Bourge, 54. "It was a miracle."
In fact, it was nothing less. For at the time she made that first solo trip, Jessica Hill was 4 years old and, because of complications during her premature delivery, had been paralyzed from the chest down since birth. In 2000, at age 2½, Jessica became the youngest patient ever accepted to the pioneering Spinal Cord Injury Program at Barnes-Jewish Hospital in St. Louis. Leading the unit is Dr. John McDonald, 39, an assistant professor of neurology at nearby Washington University School of Medicine and one of the country's top researchers in the area of spinal cord regeneration.
Over the last five years—using a combination of electrical muscle stimulation and repetitive motion exercises—McDonald has helped hundreds of paralyzed patients recover at least partial sensory function, from a tingling in their fingers to the ability to wiggle their toes. "Almost every patient receives some benefits, even if they have limited recovery," says McDonald. And today Jessica, as one of the youngest, stands—literally—on the brink of becoming one of only a handful of apparently permanently paralyzed people who have found or regained the ability to walk. Even now, says Kevin, "Jessica has improved tremendously. Every day is great."
That was not the case in the days after Oct. 30, 1997, when Jessica was born at Barnes-Jewish Hospital. Forty-five minutes before giving birth, Leann, now 31, saw an ultrasound image of her baby in the womb, kicking. But Jessica, born nine weeks premature at just 3 lbs. 4 oz., was rushed to the neonatal ICU at St. Louis's Children's Hospital. As her mother watched her in her incubator, "I could tell something was wrong," says Leann. "She moved everything but her feet."
The Hills soon learned that Jessica had a host of ailments—hydrocephalus (an accumulation of cerebrospinal fluid in the skull cavity), a septic infection and meningitis. But at 21 days came even more devastating news. Doctors told the Hills that because of an undetermined trauma during birth—most likely a strokelike injury to her spinal column—Jessica would never run, walk or even crawl. Recalls Leann: "I thought I was being punished."
Within days she made up her mind to leave her sales job at a paper company and made a vow to her baby: "I held her hand and told her, 'It doesn't matter if you can't walk. I'll carry you any place you want to go.' "
By the time Jessica came home from the hospital two months later, her blood infection had cleared, and doctors had implanted a shunt to control her hydrocephalus. To build bone density in her paralyzed legs, she was fitted for braces. Beyond that, the Hills could do little about her paralysis, except to buy her a small, custommade wheelchair. "From the minute we put her into it at age 2, she took off," says Leann.
Then, on a local TV talk show in May 2000, Leann saw McDonald discuss his pioneering work with victims of spinal injuries. Since the mid-'90s, he explained, doctors have come to understand that rather than being "hardwired," the nervous system constantly regenerates itself. "Thousands of new cells are being born every hour," says McDonald. "And that may be the first step in teaching us how to repair a damaged nervous system."
In most spinal injuries—except rare cases in which the spinal cord is completely severed—the cord's outer rim of tissue remains at least partially intact. Within that tissue are cables of nerve cells that carry critical messages from the brain to the muscles. Conventional medical wisdom had long held that there was no hope for victims of spinal cord injuries. But McDonald was one of the first to make a remarkable discovery: Repetitive movement of a paralyzed patient's legs on a bike or treadmill stimulates those cables and—for reasons scientists still don't fully understand—may cause the body to begin to repair itself.
McDonald had worked only with adults (only 10 percent of the 11,000 spinal injuries each year occur in children younger than 15). But believing aggressive treatment was Jessica's only hope, the Hills arranged a meeting with McDonald and persuaded him to take her on as his first pediatric patient in July 2000. He immediately started her on an exercise program that included being pushed in a Big Wheel tricycle by Leann while her feet were strapped to its pedals.
On Sept. 26, just eight weeks later, there occurred a tantalizing event: Jessica actually took a single hop in her aluminum walker. "If you're a parent, you can't give up on your child, and I'm not," says Kevin, 38, a city maintenance worker. "Even so, I was amazed."
In May 2001 Jessica's exercise program was augmented by six daily 10-minute sessions in a LiteGait, a physical-therapy device that suspended her over a treadmill and allowed Leann to move Jessica's legs in a walking pattern. Those exercises "took a lot of repetition," says Leann. "Not an hour a day but more like five times a day for 10 minutes each."
Then in November came solid proof that all of the hard work was paying off: Jessica sat on a kitchen table and kicked her feet for the first time. Not long after, in another first, she had enough sensation to let her mom know that she needed to go to the bathroom. "Now she feels all the way down to her toes," says Leann. "You can pinch her and she knows it."
Today, in addition to keeping up with her therapy, Jessica, an active preschooler who loves to draw with her crayons, has also begun regular sessions of electrical muscle stimulation. Given her remarkable progress, McDonald predicts that she may walk with ankle braces by her fifth birthday. "These little kids have tremendous potential," he says. "The most important thing is that they believe it can help. If they don't, they won't try."
If that's the criterion, Jessica is a shoo-in. On a recent afternoon, as the little girl worked out on her treadmill, Leann asked her how it will be to run all by herself. At that, the 4-year-old gave a double thumbs-up and uttered her pronouncement: "Cool!"
Giovanna Breu in St. Louis