World Cerebral Palsy Day is recognized each year on Oct. 6 and brings together people living with cerebral palsy, along with allies, supporters and organizations to raise awareness about this condition.
Cerebral palsy (CP) is a general term applied to many conditions that can result from a disturbance to the developing brain. It affects muscle tone, movement and coordination. About one in every 350 children in the U.S. have been identified as having cerebral palsy, making it the most common motor disability in childhood.
The prevalence of cerebral palsy is higher for children who are born premature, and that was the case for Hallie, a patient at Shriners Children's Lexington. Hallie was born six weeks prematurely, and her mom, Ginger, quickly noticed she was not meeting typical age-appropriate milestones.
"She was delayed rolling over, crawling, pulling to stand and walking with assistance," Ginger said.
When she was 6 months old, Hallie was diagnosed with cerebral palsy and periventricular leukomalacia, which is white matter brain loss on the right side.
"She cannot walk without assistance, as she has no balance," Ginger said. "She can walk with a walker and uses a wheelchair for longer distances."
Hallie came to Shriners Children's Lexington for the first time when she about 4 years old. Her parents were hoping to get a more complete look at how the cerebral palsy was impacting Hallie orthopedically. After some monitoring and orthotics, Hallie didn't need to visit again until she was a preteen.
When she was 13, Hallie started limping. She was complaining of pain when walking and needed to use her wheelchair more frequently. Hallie's surgeon, Ryan Muchow, M.D., discovered her right hip was slipping out of the socket and recommended surgery to repair her hip.
In 2018, Hallie had a surgery where the femur bone was cut and the ball part of her hip was directed back into the socket. Cuts in her pelvic bone also helped redirect the socket and create better positioning. A plate and screws were used to fix her hip and pelvis. Her femur was also cut to make her legs more even in length.
Hallie was non-weight bearing for six weeks after the surgery, but was soon able to return to the activities she loves, like school, playing for her local Miracle League baseball team and horseback riding.
"Dr. Muchow was open and honest with her about the procedure and expectations," Ginger said. "She worked hard to build up her strength before surgery. His advice was, 'If you go in strong, it will help you come out strong.'"
Now 17, Hallie reports her hip feels great and she is able to remain active. She is in high school, but participates in a dual credit program focused on animal science. When she graduates high school, she hopes to pursue a career as a veterinary technician.
On World Cerebral Palsy Day, Ginger reflected on how the condition has impacted her daughter and her family, and what she wishes others knew.
"Cerebral palsy affects everyone differently, and each person with CP is differently abled," Ginger said.
Everyday activities like speaking, standing or sitting can be challenging for some, and many children with cerebral palsy may have associated conditions related to cognition, speech, vision, hearing, breathing issues or difficulty eating and swallowing.
"There are things Hallie just can't do without hands-on assistance and she gets left out sometimes," Ginger said. "That is devastating at times. We conquer obstacles as they come and figure out a way that she can be included."
Ginger emphasized that even with these challenges, Hallie remains optimistic.
"What a blessing Hallie and her friends are to all who take the time to get to know them," she said. "They love, laugh, smile and dream big!"
Ginger said it is vital to continue raising awareness and promoting inclusion. "We all need to be aware of each others' challenges so we can work together to make our world a better place for all people, making it accessible for all, making all things possible for everyone," she said.
For other families facing a cerebral palsy diagnosis, Ginger offered encouraging words.
"So many things are possible and there is a network of families and support out there for you and your family," she said.
Ginger said Shriners Children's Lexington has been an important part of that network for Hallie.
"They have made a very scary diagnosis, surgery and recovery a manageable experience," she said. "Dr. Muchow's bedside manner was able to put Hallie and our family at ease. Between his team and all the staff at Shriners caring for her with X-rays, gait studies and orthotics, she has been very well cared for."
