You Go, Girl!

Step aside—here comes 4-year-old Jessica Hill, who beat the odds with a little help from the new Pediatric Spinal Cord Injury Program

BY DIANE DUKE WILLIAMS

Jessica with mom Leann Hill—hugs feel good too.

"Basic science research has demonstrated that the ability of the spinal cord to regenerate is much greater in the immature nervous system than in the adult nervous system."

John W. McDonald, MD, PhD

LEANN HILL WAS SITTING ALONE in the neonatal intensive care unit at St. Louis Children’s Hospital when she was told that her tiny, 21-day-old daughter, Jessica, would probably never walk.
Dashed dreams of taking Jessica to the park, playing chase and other activities rushed through her mind.

"But then I decided I was just lucky to have her," recounts Hill. "I just sat next to her bed, held her hand and told her, ‘It doesn’t matter if you can’t walk. I can take you anyplace you need to go.’"

When she entered the world nine weeks early, weighing a mere 3 pounds and 4 ounces, Jessica was battling an unknown disease that caused hydrocephalus and severe spinal cord injury that paralyzed her from the chest down.

But today, Jessica is a vivacious 4-year-old who has defied the odds. She has recovered sensation throughout her body, and last year, she took her first steps using braces and a walker. Most days, with the help of a partial-weight-supported walking system, Jessica works out on a treadmill and plays soccer with her mom in their living room in Troy IL.

Leann Hill and her husband, Kevin, attribute their daughter’s recovery to the new Pediatric Spinal Cord Injury Program at the School of Medicine, headed by John W. McDonald, MD, PhD, assistant professor of neurology and director of the program.
"She had very little movement when we went to see Dr. McDonald," says Hill.

Before they met with McDonald, the Hills were frustrated because no one was willing to give Jessica more than maintenance therapy, which included improving range of motion, preventing spasticity and teaching daily care. They believed their daughter, age 3 at the time, would benefit from more aggressive therapy.

McDonald normally didn’t treat children, but he examined Jessica and discovered that much of her spinal cord had been preserved. He agreed that she needed more advanced rehabilitation. And after receiving calls about other children, McDonald decided to launch the Pediatric Spinal Cord Injury Program in July 2001.

Only 10 percent of the estimated 11,000 new spinal cord injuries each year occur in children younger than 15. But a child’s injury, whether congenital or the result of an accident, can be devastating for a family. In addition to varying degrees of paralysis, spinal cord injury often causes loss of bowel and bladder control, skin problems, and developmental scoliosis.

Jessica tries out her new wheels with Rimma Ruvinskaya, MD, one of the Pediatric Spinal Cord Injury Program team members who is helping Jessica learn to walk.

"Initially, when parents are faced with this tragedy, they consider it the end of life," says Rimma Ruvinskaya, MD, instructor of neurology and a member of the Pediatric Spinal Cord Injury Program team. "It’s unimaginably horrible to understand that your child cannot move and cannot do the simplest things."

A year after injury, most children—like Jessica—just receive maintenance therapy. But children have a better chance of recovering from spinal cord injury than adults and can greatly benefit from intensive rehabilitation. In the past five years, McDonald says, basic science research has demonstrated that the ability of the spinal cord to regenerate is much greater in the immature nervous system than in the adult nervous system.

In the new pediatric program, which is part of the Spinal Cord Injury Program instituted in 1998, children learn to walk and care for themselves. The program emphasizes activity-dependent therapy through partial-weight-supported walking, electrical stimulation of muscles and aquatic rehabilitation. "The nervous system is accustomed to being active, and we must work to maintain this activity after an injury," says McDonald.

A multidisciplinary team of physicians cares for patients, which Leann Hill considers one of the program’s greatest strengths. "I’ve been impressed with how they work together and talk to you as a group," she says. "It’s a place where they help me coordinate Jessica’s care."

Parents and caregivers also learn, as children grow, to let them become independent. And the program focuses on all aspects of the children’s lives, including changing social and psychological needs.

Treating a child with spinal cord injury is complex. But Michael J. Noetzel, MD, associate professor of neurology who also is a member of the Pediatric Spinal Cord Injury Program team, says children can make great strides because they don’t recognize barriers. "More than anything, their mindset makes a difference. They adapt so much better than an adult would," he says.

The Hills have high hopes that Jessica will one day walk on her own. In the meantime, they’re grateful for the rehabilitation she’s received. "To actually have a pediatric spinal cord injury program so close to home is more than any parent could hope for," says Hill.