Never Say Never: Kennedy Krieger Gives Hope, Not Limits, to a Family from Nebraska

November 26, 2009
Kennedy Krieger gives hope,not limits, to a family from Nebraska.
Never Say Never

It was spring of 2007, and the town of Hastings, Nebraska, was looking forward to summer. Memorial Day weekend had come and gone, and Kirk and Jami Ortegren had just watched their son Jack crawl for the first time.

On Thursday, May 31, they dropped him off at day care, telling the staff there that he was a little grouchy because he was teething. When Jami picked him up, the staff said that he'd been crabby throughout the day and had developed a fever after lunch. Assuming it was something minor, Kirk and Jami gave him some medicine and put him down for a nap. They played with their other son, Aden, and got dinner ready. Before they sat down to eat, Jami went in to wake up Jack, only to discover he was awake and lying motionless in his crib.

"I picked him up and knew at that point something wasn't right," says Jami. "He was ragdoll limp. He just laid on my chest, his arms and legs dangling." They rushed Jack to the emergency room, where doctors feared meningitis, but hours of testing revealed nothing.

"As a mother, you're thinking of all the things you could have done wrong," Jami says. "I just kept running through everything we had done that day, looking for mistakes I might have made." The Ortegrens spent a stressful night in the ER with Jack, waiting for answers that never came.

The next day Jack was sent by ambulance to a children's hospital in Omaha. There a team of doctors diagnosed him with transverse myelitis, a rare neurological disorder caused by inflammation of the spinal cord. This can damage or destroy myelin, the fatty substance that insulates the spinal cord, which interrupts communication between the nerves in the spinal cord and the rest of the body.

Jami and Kirk listened to the doctors explain the diagnosis, hurriedly taking notes and trying to understand how a disorder they had never heard of would affect their son.

The team started Jack on a typical course of steroids to help regain some of the lost function, though there was no guarantee how much Jack would get back. Common thought also holds that whatever the steroids are able to return, no matter how much or how little, is all that will be regained.

Jami and Kirk, eager to give their son every opportunity for recovery, decided to pursue physical therapy, but unfortunately their local doctors and medical centers had never dealt with transverse myelitis or spinal cord injuries in pediatric patients.

"We didn't know where to go," says Kirk. The team in Omaha sent them to a spinal cord injury center in Lincoln, Nebraska, but Kirk and Jami quickly discovered it didn't have the equipment and expertise needed for a patient as young as Jack. Refusing to give up, they continued standard physical therapy in Hastings.

Six months after Jack was diagnosed, the Ortegrens went back to visit with the neurologist in Omaha, hoping to get advice on what to do next. Instead they got a grim prognosis.

"The neurologist told us that Jack was done, that he would be this way for the rest of his life," Jami remembers. At 14 months old, Jack was sentenced to a life without hope of recovery.

New Hope

"We weren't willing to accept that answer," recalls Kirk. "We started looking for where to go next."

Their search led them to the International Center for Spinal Cord Injury at Kennedy Krieger Institute. From their first phone call to the Center, they knew they were in the right place.

"They asked all the right questions and were able to give us all the information we had been looking for," says Jami. "I immediately felt a sense of relief."

During Jack's first visit to the Kennedy Krieger Institute, a team of specialists conducted a two-day evaluation of his needs and came away hopeful. They told the Ortegrens they needed to focus on helping Jack live with his disability. But they also believed that through the use of Activity Based Restorative Therapies they might be able to promote the growth of neural cells and help Jack gain even more function.

Now Jack comes to Kennedy Krieger throughout the year for two-week, intensive therapy sessions. During his visits he rides a functional electronic stimulation (FES) bike, which uses a computer to send electrical signals to Jack's muscles, causing them to contract so he can pedal under his own power. The therapists also help him practice walking on the lite gait, a partial weight-bearing therapy device that uses a harness to support Jack while a therapist helps him move his feet and legs.

In the future his treatment team would like to work with Jack in the unique therapeutic environment of the Institute's new aquatherapy center, where the water would support about 90 percent of Jack's weight and possibly help him do things like crawling and walking that would be impossible for him on land.

When Jack arrived at Kennedy Krieger, he didn't have any control over his abdominal muscles and wasn't able to do much with his hands. Now he is able to sit up, feed himself, push himself up onto all fours, and stand with the use of special braces. He can also move more easily into and out of his wheelchair, which means he can get around by himself and doesn't need his parents to carry him everywhere.

These improvements, though they may seem small, mean the world to the Ortegrens, because, like any two- year-old, Jack wants to explore his world. His therapies have given him the independence to do just that.

New Possibilities

Throughout their experience, the Ortegrens have never stopped looking for answers or seeking to understand their son's disorder. To better help them understand what Jack is facing, Kennedy Krieger opened up its research laboratories to the Ortegrens. During a summer visit, Jami was able to visit the lab and learn about the research being done that may someday help Jack.

"I got to go in and talk with researchers about the spine and learn about transverse myelitis," Jami says. "So many things are happening in the world of medicine, and we have to keep Jack healthy so that if a treatment comes along, he'll be ready for it."

And the team at Kennedy Krieger doesn't stop working when Jack and his parents go home. They've trained Jami and Kirk to bring therapy into Jack's everyday life and to make it fun through play. They've shared their knowledge and therapeutic approaches with Jack's doctors, therapists, and school staff back in Hastings. They've even helped a local center make the decision to purchase specialized equipment for Jack and other patients with spinal cord injuries.

"It's amazing what Kennedy Krieger is willing and able to do for our community," says Jami. "They've shared information that we had no idea was out there."

The Ortegrens don't know what Jack's future may hold, but they do know that they'll never give up. And they've found a place that is helping their son live with his disability without taking away hope for the future.

"If we had listened the first time we were told that Jack would never get any better, where would we be now? Everywhere we've gone they've given us a time frame," Kirk explains. "They tell us if he's not better in six months, a year, that he won't get better. At Kennedy Krieger, it's not like that. They never say never."

Kennedy Krieger Institute Announces Retirement of President and CEO

Dr. Gary W. GoldsteinThe Institute’s board of directors is conducting a national search and is expected to name a new CEO in the coming months.
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