About a week after Penelope Miller was born, in July 2012, her parents noticed her leg movement was more frog-like than her older brother’s was when he was a baby, and she didn’t have a strong kick. A visit to the doctor determined that everything was fine. Yet her parents, Tim and Heather, remained concerned. The family continued to visit doctors, and Penelope seemed to get stronger.
Until March of 2013. At the beginning of the month, Penelope was in such pain, particularly at night, that she writhed in her crib. Doctors diagnosed extreme constipation. Tim noticed thereafter that his daughter wasn’t standing as well, but thought she was dehydrated. By mid-month, she was completely paralyzed from the waist down. She was eight months old.
A Shocking Diagnosis
An MRI revealed a tumor inside Penelope’s spinal canal that was compressing her spinal cord. The tumor extended into her abdomen. Penelope was diagnosed with neuroblastoma, which would require chemotherapy and surgery.
A neurosurgeon successfully decompressed Penelope’s spinal cord, but the surgery and impact of the tumor took their toll. When she returned home, “She couldn’t roll over or even sit up by herself,” says Heather. “She had no sensation or movement from her belly button down.”
Penelope’s physical therapist knew the family had an unparalleled resource for their daughter’s paralysis at the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger Institute. “The home therapy was great,” says Heather, “but we needed more equipment. Everything we needed would be at Kennedy Krieger.”
Many spinal cord injury rehabilitation programs are adaptations of adult models; ICSCI is unique because it has programs and equipment specifically designed for children. There, the family found a team of professionals who made it clear they would do everything in their power to improve Penelope’s mobility and independence.
“They’re the most amazing people ever,” says Heather. “They’re such kind, ridiculously smart people, and you are in awe of the compassion they have. They’re very confident without ever being egotistical.”
At the time of her initial evaluation, Penelope spent most of her time lying on her back. But physical therapist Amanda Oakley was optimistic that Penelope would respond well to activity-based restorative therapies (ABRT), the touchstone of ICSCI’s model of care.
After a spinal cord injury, the delivery system that sends a message from the muscle to the brain is interrupted. ABRT uses repetitive motion to stimulate neural cells to remember how to move, while encouraging the growth of new nervous system cells. Of course, when working with children, this hard work needs to be fun.
“We try to incorporate play into every therapeutic intervention,” explains Oakley. Penelope loves baby dolls, so to encourage her to crawl, therapists would place a doll at the end of a mat. Once she got to the doll, Penelope would transition from the crawling position to standing to get the baby into the stroller and back to her mom. As Oakley explains, “This was key functional mobility, but for Penelope, she was simply playing.”
Penelope’s twice- weekly therapy sessions included walking on a partial body weight-supported treadmill and weight-bearing exercises using a bracing system for her spine and legs. As she regained her strength, the bracing system was reduced to promote independence and nervous system recovery. In the pool, therapists used the natural buoyancy of water to improve Penelope’s walking and teach her important transfers, like how to go from sitting to standing.
Back on Her Feet
Soon, Penelope was making friends. When she saw other children walking, that was exactly what she wanted to do, so she would “race” them as she walked with her walker. At home, her four-year-old brother Jackson encouraged her to walk and move through play and games.
Oakley says that when she first met Penelope, her family's wish was for Penelope to walk by Easter. That’s exactly what she did.
“Penelope made her family's dream a reality when she walked down the aisle at church on Easter Sunday holding her mother’s hand,” Oakley reports.
In a short time, a baby who could barely sit up had grown into a toddler who could walk with the support of a walker and pedal a bicycle like her big brother. She was released with a home rehabilitation program, and the family stayed in touch with Penelope’s care team. “Once a patient comes to the center, they’re always a patient,” says Oakley. “We are always a quick phone call or email away.”
Heather says Penelope’s advances are evidence of the power of prayer combined with the skilled, knowledgeable, and patient specialists at Kennedy Krieger. Penelope returned to ICSCI in the fall to resume her therapy and build on the gains she’s made. While there may be a day when she no longer needs Kennedy Krieger, Heather quips that they’re going to be like the proverbial houseguest who sticks around. “We’d like to stay at Kennedy Krieger as long as they’ll have us,” she says. “We think they are the best of the best.”
Therapeutic Interventions- International Center for Spinal Cord Injury