Walking Tall

from Children's Magazine, Winter 2006

Story by Melissa Howell                                               

Photography by Tia Brayman

“There are no words to describe how my heart feels to see that boy stand,” Pat Dale said with tears in her eyes.

Twelve-year-old Daniel Dale of Parker, Colo., stands in the center of the floor in his crisp white martial-arts uniform showing off his moves. His parents, Curt and Pat Dale, watch him intently, their faces expressing the pride they feel. It’s not necessarily Daniel’s moves that give them joy; it’s the fact that he’s standing at all.

It has been a long journey for Daniel, who was born prematurely to a mother addicted to crack cocaine, which resulted in his cerebral palsy. When the Dales adopted Daniel, they were told he would be a vegetable. Years of therapy and surgeries at The Children’s Hospital, along with Daniel’s hard work and his family’s dedication, allowed Daniel to progress from a wheelchair to a walker to crutches to canes. Just a few months ago, he started walking independently. His family and caregivers at Children’s call it a “miracle.”

‘Vegetables Don’t Grin’

Pat and Curt had been providing foster care for an adoption agency when they received the call that Daniel was available for adoption in Galveston, Texas. Daniel had been born at 28 weeks gestation, and weighed just 2 pounds, 14 ounces at birth. His birth mother used crack cocaine, which caused Daniel to have a “bleed” in his brain.

“They said he had a Grade IV bleed in the brain, which is the worst,” said Curt, a retired Air Force colonel. “They asked us if we wanted to adopt him, and told us quite frankly that Daniel would probably be a vegetable, unable to do anything.”

But Pat and Curt felt strongly that 2-month-old Daniel should join their family, which included six other children – “three homemade, three adopted,” Curt said.

When the Dales arrived in Galveston, caregivers at the hospital wanted to brief them on Daniel’s problems before taking them to meet him.

“I said, ‘No, let me see my baby first,’” Pat said.

“We went upstairs and they handed Pat this beautiful red-headed, blue-eyed baby,” Curt said. “She held him and then handed him to me; he just had this incredible, piercing eye contact. I chucked him under the chin and got a great big grin, and I said, ‘Pat, vegetables don’t grin.’”

Four days later, the Dales brought Daniel home to Colorado. Within two weeks the paperwork arrived from Texas, and the typed information read that Daniel had a Grade I-II bleed in the brain, significantly less severe than a Grade IV. The physician’s written information simply had been misread. Four other adoptive families had turned Daniel down because of the initial diagnosis.

“Had that not been done, we probably wouldn’t have ever gotten Daniel,” Curt said. “But that’s the way it ended up.”

‘I Falled Again’

When Daniel was 10 months old, the Dales brought him to see Dennis Matthews, MD, chief of Rehabilitation Medicine at Children’s. Dr. Matthews is co-director of Children’s Cerebral Palsy Clinic, which cares for more than 2,000 patients. Dr. Matthews determined that Daniel had cerebral palsy, which resulted from the bleed in his brain.

“Daniel has diplegia, the most common form of cerebral palsy in premature babies who have a bleed in the brain,” Dr. Matthews said. “Diplegia affects the legs primarily, and causes difficulty with walking; the children often walk with their legs turned in.

“I remember meeting with the family and discussing the diagnosis of cerebral palsy. We talked about the fact that Daniel would have difficulty walking.”   

Dr. Matthews said the bleeding in the brain occurs where the fibers cross to control leg movements.

In the 12 years since that first meeting, Dr. Matthews has worked with Daniel, his family, therapists and orthopedic surgeons in designing a rehabilitation program to help Daniel improve his mobility. One of the first steps was getting Daniel started in therapy. Shortly before his first birthday, Daniel started receiving physical and occupational therapy at Children’s Therapy Center: Aurora (Southeast) , just minutes from the Dales’ home in Parker. Staff at the Therapy Center see between 700 and 800 patient visits a month for physical therapy, occupational therapy, speech and learning services.

“His therapists started by working out his little legs and stretching him,” Curt said. “How happy we were when he first started to crawl, dragging along his legs. Then he started to make them just fly as he tried to crawl with them. Eventually, he came up on the knees, and it’s been ‘Katie bar the door’ since then.”

When Daniel was 3, he started walking with an assistive device, but with great difficulty. Pat remembers that one of Daniel’s first sentences was, “I falled again.” But Daniel was always so determined, his family and caregivers said.

“Daniel is always willing to work hard,” Dr. Matthews said. “Even as a little boy he worked at therapy a lot.”

“His strength is his determination; he doesn’t have much self pity, if any,” Curt said. “He’s a good self-advocate and has a marvelous personality, lots of love, inner strength and tremendous faith.”

Therapy Not Enough

Daniel continued with therapy, going as often as five times a week when he was very young. But as he grew, his cerebral palsy began to cause his hip joints to slip out of their sockets.

“In children with cerebral palsy, their muscles don’t receive proper information from their brains,” said Frank Chang, MD, director of Orthopedic Surgery at Children’s and associate professor of Orthopedic Surgery, Pediatrics and Rehabilitation Medicine at the University of Colorado at Denver and Health Sciences Center. “That subsequently causes deformities in the skeleton as they grow. In Daniel’s case, the ball was gradually slipping out the socket in his hip joint because of abnormal muscular pulls. The abnormal muscle balance caused the bones to not form properly, which resulted in that deformity. He also had abnormal forces deforming the bones in his feet as he grew, resulting in a very flat foot that couldn’t be controlled with bracing.”

Dr. Chang is co-director of Children’s Cerebral Palsy clinic, along with Dr. Matthews. They see patients together, which allows them to best decide what treatments patients need.

“Children’s is the best place for children with cerebral palsy because we have a multidisciplinary approach; we have all the physicians and therapists here to coordinate the care,” Dr. Matthews said.

In Daniel’s case, his physicians determined that surgery was necessary to correct his hips. To confirm this, they referred Daniel to the Center for Gait and Movement Analysis (CGMA) at Children’s, a high-tech laboratory designed to study the way children walk.

The CGMA opened in 1999, the first such center in the Rocky Mountain region. Since its opening, staff in the CGMA have performed more than 1,200 evaluations, mainly on patients with cerebral palsy.

By placing tiny electrodes over patients’ muscles to record electrical activity and attaching shiny silver balls to the joints that reflect visible red light to special cameras, CGMA staff can evaluate a patient’s gait and walking patterns. This analysis is then used to determine the best interventions to improve a walking pattern.

“We spend about 15 to 20 hours analyzing every patient we see,” said James Carollo, PhD, CGMA director.

“We first saw Daniel when he was 6,” said physical therapist Bobbie Lutz, a clinical program specialist for the CGMA. “Daniel was very bubbly, running around in his walker. There was X-ray evidence showing he needed to have the bones in his hips turned, and the bones in his feet done. We did a gait analysis, which confirmed that those were appropriate and needed. In children with cerebral palsy, their gait is so complex it’s difficult to just watch them walk down the hallway and pick up the things they need. With the gait analysis we also recommended that Daniel’s heel cords be lengthened.”

At the time, the Dales’ military insurance, TRICARE, did not cover gait analysis. Curt contacted several children’s hospitals and gait analysis laboratories throughout the country and put together a 200-page study to prove to TRICARE the value in gait analysis.

“It took a couple of months, and ended up with the Secretary of Defense,” Curt said. “The government reversed its policy on gait analysis; it is now approved for all military dependents.”

“Col. Dale has been very valuable,” Dr. Matthews said. “He saw the value of the Gait Lab, and probably single-handedly convinced TRICARE to pay for gait and motion analysis nationally.”

Dr. Chang performed the surgery on Daniel’s hips and feet. The hip surgery involved breaking both of Daniel’s hips, and changing the alignment of the hipbones.

Dr. Chang removed a 30-degree wedge of bone, and bent down the hipbone so that it fits back into the socket. Metal plates and screws were used to hold the pieces together while Daniel healed. In addition, Dr. Chang realigned Daniel’s arches by adding a piece of bone to his arch, and lengthened his heel cords by making three tiny incisions in the Achilles tendons to stretch them. Following the surgeries, Daniel was in a body cast from his chest to his toes for six weeks.

“We realigned his hip joint, which was very successful,” Dr. Chang said. “Without surgery, it would have gotten worse. We also realigned his arches, allowing him to stand and walk better. It’s likely he wouldn’t have been able to take any steps without surgery.”

Curt said, “Dr. Chang and Dr. Matthews are an incredible team. Dr. Chang is an absolute character, and Dr. Matthews is a great tease. They really put Daniel at ease.”

Dr. Chang said, “We’ve got the team of people and the expertise here to determine what patients need and then provide the care. We have a nurturing environment, and all providers care for kids. Everyone here tries their best to help patients reach their maximum potential.”

Continued>>>