Seventeen-year-old Van Brooks felt somewhat out of place talking to adults with spinal cord injuries after his own paralyzing accident last fall. Sure, the older men and women gave him some good tips on how to adjust to being paralyzed from the waist down, but the young man wanted something different — a connection with a peer.
“It’s easier for me to talk to someone my age,” the Baltimore resident says.
Now young patients like Van will have peers with whom to talk, and doctors specifically trained to work with younger paralysis patients.
The Kennedy Krieger Institute’s new International Center for Spinal Cord Injury in Baltimore is designed to care for and treat spinal cord injury patients younger than 18. It’s a group given short shrift by the larger spinal cord injury community, in part because experts say only about 20 percent of spinal cord injury patients are children. The center’s creators say it’s the only facility of its kind in the world, dedicated solely to treating children with this type of injury.
Van says it took time for him to deal with the accident he suffered while playing football in September at Georgetown Preparatory School in Rockville.
His doctors acted more swiftly on his behalf. He was flown to the University of Maryland Shock Trauma unit, where he endured surgery to release pressure on his spinal cord.
From there he went to Kernan Hospital in Baltimore for Physical Therapy and later to the center to take part in its Rehabilitation and restoration program, part of center director Dr. John McDonald’s approach to treating patients with spinal cord injuries.
Dr. McDonald previously served as Christopher Reeve’s neurologist, putting the “Superman” actor through his physical paces to help him regain some sensation in his limbs.
Dr. McDonald’s activity-based restoration therapies (ABR) shocked the medical community with their results and affirmed that spinal cord patients have some hope of minor recovery.
Those gains, no matter how small, could be larger when the therapies are used on children.
“Younger nervous systems have a greater capacity for recovery,” Dr. McDonald says.
Children with spinal cord trauma have other advantages over older patients as well.
“They’re not as gravitationally challenged. They can be moved around because they’re smaller,” he says.
Their general innocence also can boost their chances. When an adult learns he or she has suffered a paralyzing injury, the first response often is hopelessness. That’s not necessarily the case with children, he says.
“Children don’t know any better,” he says. “If you tell them ‘no,’ they often go and do the opposite.”
The center offers 60 inpatient beds and is slated to see more than 100 patients a month. Patients will come from all over the country and around the world, Dr. McDonald says.
The goal isn’t to make patients dependent on the center’s facilities, but rather to prepare them for a time when they can duplicate the motion exercises in their own homes.
Those options include exercise-style bicycles with computer-controlled pulses to stimulate the legs into action and reverse muscle wasting caused by inactivity.
One such device allows a paralyzed person to roll his or her wheelchair into a cyclelike machine, which then beams data on workouts to both the Kennedy Krieger center and the patient’s local doctors via the Internet.
Jeffery Twiss, a senior research scientist at the Alfred I. du Pont Hospital for Children in Wilmington, Del., says his own pessimism on the chance for any type of recovery among spinal cord victims has turned around in recent years.
“I thought it was a hopeless situation,” Mr. Twiss says. “Over the years, there have been a lot of small steps. Put them together, and it’s a huge step with what’s possible now.”
For someone with a complete spinal cord injury, resulting in becoming either a Paraplegic or a quadriplegic, recovering 10 percent of his or her former function can be a “huge step,” he says.
“We don’t know what degree of recovery is necessary to impact their life,” he says. “For Christopher Reeve, just recovering a little bit of movement and sensation is a lot.”
Younger patients have a better chance at that kind of recovery, he says.
“The younger nervous system is a lot more plastic. It has the capacity to grow and remodel itself much more than the adult system does,” he says. “We still don’t realize how to harness that power, but we will.”
Marcie Roth, executive director of the District-based National Spinal Cord Injury Association, says fewer children suffer these injuries because they generally don’t engage in higher-risk behaviors.
“Most of the injuries tend to be associated with either a car accident or falls or sports — diving is a big one,” Ms. Roth says. Plus, “the younger a body is, the more likely the body is able to withstand traumatic injury.”
One aspect a center like the Kennedy Krieger Institute should include, Ms. Roth says, is incorporating the family into each child’s treatment. Center officials say physical therapists will help train the patients’ families to perform the motion exercises and movement-based therapies at home. They also will help caregivers look for signs of Depression and the need for emergency treatment.
“It’s really important that families get a very balanced message,” Ms. Roth says, recalling one family that liquidated their assets and moved to the United States thinking the country’s doctors could reverse the paralysis.
“One of the exciting things about a center like this is that they can really focus on making sure that there is balance and that the broader needs of the family is kept in the forefront,” she says.
The new center also should look beyond treatments to provide children with the social and vocational support they’ll need, she says.
“Ultimately, they should be in a position to seek employment and participate in the full bounty of the good life like any other individual,” she says.
The center intends to focus on the overall development of its patients, providing them with academic, social, emotional and behavioral skills to prepare them to become active citizens, center officials say.
Van undergoes treatment six days a week, half of which is done in his home. The activities include standing exercises for balance control and riding on a special exercise bicycle meant to keep his legs strong and maintain his overall muscle tone.
He has some simple advice for any youngster who may suffer a similar injury.
“Everything gets better. Just keep your head up,” he says.
By Christian Toto – THE WASHINGTON TIMES
