Katelyn is fiercely independent. A go-getter since she was born, the 15-year-old loves singing and dancing and has done cheerleading since she was 5 — all in a wheelchair. She is also committed to raising awareness about Shriners Children’s and advocating for kids with disabilities.
Katelyn was diagnosed in utero with spina bifida. Shortly after learning her baby’s condition, her mother, Haydee, came across a television special produced by Shriners Children’s about children with spina bifida. Haydee knew very little about the condition, but found it enlightening and reassuring.
“No one in my family knew about it,” she said. “The timing of seeing the special couldn’t have been more perfect.”
Three months after her birth, Katelyn became a patient at Shriners Children’s Northern California.
Shriners Children’s provides comfort
The annual clinical care meeting of the Spina Bifida Association took place at Shriners Children’s Northern California.
Spina bifida, a congenital birth defect, affects the formation of the backbone and can lead to damage to the spinal cord and nerves. Not all people born with spina bifida have the same needs, and the seriousness of complications can vary, so each child’s treatment plan is customized.
“Shriners Children’s has been a blessing for our family,” said Haydee. “They have seen Katelyn grow up. She hasn’t been anywhere for medical treatment but Shriners Children’s since she was a baby.”
During Katelyn’s visits, Shriners Children’s offered her everything in-house for her care. From orthopedic surgery to a wheelchair to social connections, her care team made sure she had the tools to live independently.
“They always ask, ‘What does she need?’ ‘What does your family need?’ They’re always so accommodating and helpful,” said Haydee.
Recently, Katelyn received special leg braces. Called a reciprocating gait orthosis, the braces help her walk independently. The sides of the orthosis are connected by a gable system, so when Katelyn moves one leg, it assists the other leg in moving properly. This makes for energy-efficient movement and offers a way for someone who generally relies on a wheelchair to practice walking movements.
Katelyn said the device gives her an amazing opportunity to feel what it’s like to walk. “I love to show that kids with disabilities can do anything,” Katelyn said.
Making her own impact
Katelyn and her family in Sacramento, California.
In fifth grade, Katelyn made bracelets to sell, raising $500 to donate to Shriners Children’s Northern California.
Along with raising awareness for Shriners Children’s, Katelyn has been an active voice in her student body. She has been class president of her high school for the past three years and uses this position to advocate for other kids. One of her proudest moments was pushing for fire safety precautions that are suitable for students with disabilities. The school installed a fire safety chair to help students safely descend the stairs in case of a fire or fire drill.
“Sometimes schools don’t realize certain things could be an issue. I don’t want to leave my school knowing there is more I could have done for future students with disabilities,” she said. “I have brought awareness to Shriners Children’s, spina bifida and kids with disabilities at my school.”
Shriners Children’s shares its expertise
Shriners Children’s Northern California recently hosted the annual clinical care meeting of the Spina Bifida Association.
“Together with the Spina Bifida Association’s unparalleled advocacy and support network, we are creating a powerful alliance that ensures families receive the resources, education and medical care they need,” said Shriners Children’s Northern California Hospital Administrator Kenny Pawlek. “This partnership underscores our mutual dedication to empowering children with spina bifida to lead healthy, fulfilling lives.”
Fifteen Shriners Children’s care professionals presented at the conference, which was attended by providers from across the United States and Canada. Among many discussions, attendees heard updates on two high-profile research projects: the MOMS and CuRe trials. Diana Farmer, M.D., chief of pediatric surgery at Shriners Children’s Northern California, is a major investigator for both. The Management of Myelomeningocele Study (MOMS) is a seminal study that showed the benefits of performing a surgical repair on the malformed spine prenatally — that is, before birth.
Traditionally, those born with spina bifida had their spine repaired after they were born. Before the routine use of ultrasound, the condition was never known until after the baby was born.
The MOMS trial showed that children with spina bifida who received surgery while they were still in the womb, presumably before much damage had been done to their spinal cord, had less disability.
Dr. Farmer is the senior author of the publication of the trial results. The CuRe trial is a project of Dr. Farmer, the University of California, Davis, and Shriners Children’s. Researchers are trying to determine if fetal surgery can be improved even further with the use of stem cells, which contain a “growth factor” that might help repair or protect the spinal cord.
Facilitating the transfer of care when a child with spina bifida moves from pediatric care to adult healthcare was another topic at the Spina Bifida Association meeting. This topic is particularly relevant because only within the past 40 years have many individuals with spina bifida survived past adolescence.
The fact that children with spina bifida can expect to live a longer life is changing how care is delivered. The focus used to be on keeping the child comfortable, healthy and alive, but now it is on helping them thrive, too. And Shriners Children’s is in a perfect position to lead the way.
Shriners Children’s is ideally suited to help kids, such as Elliana, be active because our teams include physical, recreational and child life therapists and sports medicine specialists.
Adaptive sports for spinal conditions
At Shriners Children’s Erie, patients with spina bifida are encouraged to participate in adaptive sports. Shriners Children’s is ideally suited to help kids be active because our teams include physical, recreational and child life therapists, and sports medicine specialists.
A therapeutic riding program allows children with spinal cord conditions to ride a horse forward and backward to strengthen and stimulate leg muscles, provide a massage and stretch. And it’s a whole lot of fun, too.
Patients can also participate in wheelchair basketball and sledge hockey, which help build skills and give kids the chance to enjoy a sport with their peers. Former Shriners Children’s Erie sledge hockey players have gone on to the Paralympics and received college scholarships, said Michelle DeRooy, outcomes coordinator at Shriners Children’s Erie.
“Adaptive sports programs promote healthy physical activity, strength building, endurance and coordination,” says Kristin Maguire, a child life specialist at Shriners Children’s Erie. “For patients with spina bifida, adaptive sports improve mobility, reduce muscle weakness and enhance balance, building on the progress made in physical therapy by reinforcing skills in a fun, real-world setting.”
Elliana is a spunky 7-year-old who has been treated for spina bifida at Shriners Children’s Erie for four years. The multidisciplinary care and support she receives there have helped her develop independence and self-confidence.
Elliana has received care through the physiatry program, which has also helped connect her with some of the medical center’s adaptive sports offerings. This summer, she participated in wheelchair basketball and enjoyed playing a competitive sport. She also participated in snow tubing and is considering joining the sledge hockey team.
“Overall, simply being active, playing a game they love, makes it a fun and fulfilling experience,” said Maguire.
Shriners Children’s is a place where patients with spina bifida have access to the latest clinical treatments supported by leading research. And it’s where our innovative and therapeutic programs give children the chance to thrive.
