Born at just 25 weeks, 4 days and weighing only 1 pound, 4 ounces, Hailey Bertoncino has had to fight for her life since day one. So when she was diagnosed with cerebral palsy, she faced that challenge head on, too.
Cerebral palsy is caused by brain injury, which occurs before, during or immediately after birth. According to the Cerebral Palsy Foundation, nearly half of the children who develop CP are born prematurely, like Hailey.
CP can cause a wide range of physical impairments, affecting the muscles and a person’s ability to control them. For Hailey, that’s meant spasticity. The muscles in her legs contract too much, causing problems with her balance and coordination.
“Hailey didn’t start walking until she was about 2 ½ years old,” said her mom, Kayla Bertoncino. “And when she did start to walk, it was on her tippy toes. Her muscles were super tight, and that caused her a lot of pain.”
Hailey was 2 years old when she first met Kimberly Hartman, MD, a specialist in pediatric physical medicine and rehabilitation at Children’s Mercy Kansas City.
“Hailey’s parents brought her to me with general concerns about her overall development,” Dr. Hartman said. “Because she was so young, we tried therapies, like bracing and stretching, to improve her tone and help her become more stable walking.”
At about 4 years old, Hailey began having botulinum toxin injections every six months in her tight leg muscles.
“The goal of the injections was to relax those muscles,” Dr. Hartman explained. “Initially, the injections helped, but as Hailey grew, they became less and less effective.”
When Hailey returned to see Dr. Hartman last summer, the pain in her legs had gotten even worse. To compensate, she had changed the way she moved, and family members were carrying the first grader.
“Hailey was complaining about the pain in her legs and she was falling quite a bit because her balance was off,” Kayla said. “She was trying to keep up with the other kids her age, but when she would fall, she would hurt her arms, hands and knees. She was getting pretty banged up.”
“It had been a few months since the last time I had seen Hailey,” Dr. Hartman said. “It was heartbreaking. We needed to find a better treatment for Hailey.”
Dr. Hartman describes Hailey as “spunky and motivated.” Her mom says she’s “sassy and a fighter.” All are qualities that made her a good candidate for the Children’s Mercy Comprehensive Movement Disorders and Spasticity Clinic. The program is one of a handful in the nation, and the only program in the region, that takes a global approach to treating movement disorders.
This team’s strategy provides better outcomes, increases patient and family satisfaction, and reduces time at the hospital. These experts work together to provide the best treatment plan for patients with complex movement disorders and spasticity. In addition to seeing patients with CP, they also care for patients diagnosed with musculoskeletal deformities, chorea, dystonia, myoclonus, kernicterus and ataxia.
Treatment options may include high muscle tone injections, oral medications, intrathecal baclofen pump, selective dorsal rhizotomy, motion gait lab analysis, deep brain stimulation and orthopedic surgery. Hailey saw specialists in neurology, neurosurgery, orthopedics and rehabilitation medicine at her first clinic visit. They simultaneously evaluated her medical needs, including input from her parents.
“At Hailey’s clinic visit, we talked about measuring how she was walking using motion gait analysis,” explained Sathya Vadivelu, DO, pediatric physical medicine and rehabilitation.
Motion gait analysis is performed at the Children’s Mercy Sports Medicine Center at Village West. The 2,000-square feet 3-D motion analysis and human performance lab features 20 cameras. This state-of-the-art technology involves placing surface electrodes in key locations on the patient’s body, then capturing video of the patient in motion. This is combined with an extensive evaluation by physical therapy to determine the child’s ability to selectively control muscle groups.
“This information, along with the multidisciplinary clinical assessments, helped to determine that Hailey would be a really good candidate for a surgery called selective dorsal rhizotomy, or SDR,” Dr. Vadivelu said.
“Hailey represents a typical child who needs this operation,” agreed Michael Partington, MD, the pediatric neurosurgeon who performed her surgery. “It works best for children who have spasticity, who are used to walking on their toes, knees turned in, and who are between the ages of 3 and 10.”
The goal is better motor control, relief from back pain, improved results in physical therapy, and fewer incidents of muscle stiffness.
Hailey’s parents agreed with the team—she needed the surgery to improve her ability to walk, run and live her life like any other 7-year-old.
Surgery + Rehabilitation = Success
During the SDR procedure, Dr. Partington created a small incision in Hailey’s lower back, exposing the muscles. He then removed the spine’s protective covering, revealing the spinal cord and nerves underneath. Using X-ray and ultrasound technology, he located the tip of the spinal cord, identifying and separating the motor nerves from the sensory nerves.
After testing the nerves via neurostimulation monitoring, Dr. Partington severed some of the abnormal nerves. This prevents those nerve fibers from transmitting the messages that cause the muscles to spasm.
Though Hailey recovered well from the operation, it was equally important to her success that she complete intensive in- and outpatient rehabilitation.
“After we perform the surgery, the child has to re-learn how to walk, and that can be very difficult,” Dr. Partington said. “Without intensive rehabilitation, the child will return to toe walking, because that’s how they learned to walk originally.”
“What makes Hailey’s case unique is that Children’s Mercy can offer all of the services she needed after an SDR,” Dr. Vadilevu said. “Plus, her family was really committed to her recovery. They wanted to do the best they could for Hailey, and they understood that surgery and rehabilitation go hand-in-hand.”
Four days after the operation, Hailey was admitted to the Children’s Mercy Inpatient Rehabilitation Program, which is accredited as a Comprehensive Integrated Rehabilitation Program and Pediatric Specialty Program by the Commission on Accreditation of Rehabilitation Facilities.
For the next three weeks, the program’s physical and occupational therapists helped her re-learn how to move, stretch, stand, and eventually take a few steps.
“Given the changes to her body and how she controls it, we helped Hailey learn how to process the new sensations she was feeling following surgery, and also helped her re-learn how to perform daily activities, like dressing and bathing,” Dr. Vadilevu said.
Kayla spent every moment she could at her daughter’s side, and was thankful Children’s Mercy encouraged family-centered care.
“I was able to stay in the room with Hailey while she was hospitalized,” Kayla said. “That meant a lot to me.” Hailey’s father, Henry, continued to work, but would drive up from Wellsville to spend the night with his family.
All SDR patients must participate in intensive inpatient rehabilitation for up to two months after the operation. But because Hailey’s family was able to take her to outpatient rehabilitation five days a week, she was released from the hospital after 24 days.
Initially, Kayla took her daughter to outpatient rehab sessions daily. Now thanks to Hailey’s hard work, her range of motion and strength are improving every day, and she’s graduated to rehab three days a week.
Long term, Hailey is looking forward to playing T-ball this summer with her friends on the Red Rockets, the team her dad helps coach.
“We are more than thankful for everyone at Children’s Mercy,” Kayla said. “The nurses and doctors took wonderful care of Hailey.”
Henry agreed. “This entire process was amazing. Hailey’s doctors went above and beyond to prepare for her surgery, and to prepare us, too. These are the results that Hailey deserves.”
Learn more about the Comprehensive Movement Disorders and Spasticity Clinic and Rehabilitation Medicine at Children's Mercy.