Bright Futures

Casa Grande Girl Is Resilient Despite Spinal Cord Injury

Paralysis doesn’t keep 10-year-old Lilye from reaching her dreams. She is an adaptive athlete who loves water sports, skiing and raising calves through her 4-H chapter in Casa Grande. However, the gregarious fourth grader recently underwent spinal fusion surgery for scoliosis at Phoenix Children’s. Though it was a difficult procedure, Lilye was back in school with her classmates just a few weeks later.

“Lilye has been through many surgeries, and this one was the most intense,” said her mother, Jennelle. “But she made it out like a rock star.”

A Mysterious and Devastating Spinal Injury

Born “perfectly healthy,” Lilye was walking by the time she was 10 months old.

At 18 months old, Lilye had a minor fall while sitting in a toddler-sized lawn chair. She didn’t seem to be seriously hurt. However, the next morning when Jennelle went to get her daughter out of bed, she was shocked at Lilye’s condition.

“She was like a wet noodle,” Jennelle recalled.

After an emergency evaluation at her local hospital, Lilye was airlifted to Phoenix Children’s, where imaging tests revealed bleeding on her spine. She was rushed into surgery. The operating team discovered an arachnoid cyst on her spine.

Arachnoid cysts, typically present at birth, are noncancerous, fluid-filled sacs found on the arachnoid membrane covering the brain and spinal cord. They often go undetected.

Though surgeons removed the cyst from Lilye’s spinal cord, it had already caused nerve damage, leaving Lilye paralyzed from the waist down. She has used a wheelchair for mobility since then.

“Our whole world was crazy at that point,” Jennelle said. “It just broke my heart.”

Since her surgery, Lilye has continued receiving care from specialists at Phoenix Children’s, including a neurosurgeon, neurologist, urologist and physical therapist.

“Phoenix Children’s has been our place since Lilye was a year and a half,” Jennelle said. “We’ve received personalized care. Everybody knows who Lilye is, and they have all been helpful. It’s nice having everything we need in one place.”

A Common Complication of Pediatric Spinal Cord Injury

Nearly three years ago, Lilye was diagnosed with scoliosis, an abnormal curvature of the spine that affects 6 to 9 million Americans, according to the American Association of Neurological Surgeons. More than 90 percent of children like Lilye, who suffer a spinal cord injury before puberty, will develop scoliosis, according to the American Spinal Injury Association.

Left untreated, scoliosis may cause problems with digestion, breathing and blood circulation. Lilye began experiencing headaches, as well as pain and weakness on the side of her body with the curve. By last fall, Lilye’s spinal curve had progressed to over 60 degrees, and one shoulder was noticeably higher than the other.

Lilye was referred to Gregory R. White, MD, division chief of Orthopedics, at Phoenix Children’s Comprehensive Pediatric Spine Center. In March, Dr. White and neurosurgeon Jamal McClendon, MD, performed spinal fusion surgery on Lilye, from her shoulders to her pelvis, as reflected in the above images. The procedure involved correcting and stabilizing the spine with rods and screws. Next, surgeons fused together the vertebrae to prevent the curve from progressing. Dr. White accessed Lilye’s spine from her back, called a posterior approach.

As the only children’s hospital in Arizona with a collaborative neurosurgical and orthopedic Comprehensive Pediatric Spine Center, Phoenix Children’s is a leader in diagnosing and treating all types of pediatric spine issues and deformities. This combination of multidisciplinary expertise plus leading-edge technology allows children like Lilye to receive customized care at each stage of growth.

Inspiring Others

A Girl Scout, Lilye is “sassy, strong-willed and outgoing,” Jennelle said. Every summer, she loves attending Girl Scout Camp and Camp Patrick – an overnight camp for kids with spina bifida. Even though Lilye doesn’t have spina bifida, her symptoms and needs are similar, making the program a good fit for her.

“Lilye is very brave – I call her my super girl,” she said.

Lilye’s positive attitude and determination inspire those around her. Her teacher and classmates sent her a care package of comfort items for her stay at Phoenix Children’s.”

“Lilye has taught me that nothing can stop you from achieving your goals,” her teacher recently shared on social media. “The biggest thing she taught me is nothing defines you … This has forever changed me, and she changes the world around her without even knowing… I am so grateful for her wisdom. I can’t wait to see what impact she continues to make in the world.”

Jennelle is especially grateful for the care and support Phoenix Children’s has given Lilye and the rest of the family.

“The Phoenix Children’s family has made a big difference for Lilye,” Jennelle said. “They don’t treat her as just a number. Lilye is treated as an individual, and that’s always been so special to me.”