Kaylie, Landon and Hudson Phillips
For years, Holly Phillips from Cedar Lake, Ind., had the feeling there was something wrong with her daughter Kaylie. As Kaylie grew through her toddler and preschool years, she had a hard time walking properly, would fall often and was never fully potty-trained. “Her pediatrician said she was fine,” says Holly. She knew her daughter had been born with a deep sacral dimple—an indentation in the skin on her lower back—but she was reassured when doctors couldn’t find any related problems. “We then saw an orthopedic surgeon who said she ‘would grow out it,’” says Holly.
It wasn’t until Kaylie’s younger brother Landon developed health problems of his own that the family found answers that would ultimately help three of their four children. At Riley Hospital for Children at Indiana University Health, Pediatric Neurosurgeon Jodi Smith, M.D., began treating Landon for Chiari malformation, a condition where brain tissue protrudes from the base of the skull down into the spinal column. She asked if any of his siblings had any unexplained health problems. After hearing about Kaylie, Dr. Smith immediately recommended an MRI. Dr. Smith discovered that Kaylie had tethered spinal cord syndrome, which caused her spinal cord to be pulled tightly, restricting nerves. Riley Pediatric Urology Nurse Practitioner Shelly King confirmed that Kaylie’s bladder problems were related. Dr. Smith performed surgery two days later to release the tethered cord. “These kind of problems are often disregarded, and the family can be told that the child just needs to try harder,” King says. “It was very exciting to find that this family had not given up, and it brings great joy to me to know that I have been a part of it.”
Soon after Kaylie’s problems were discovered, her youngest brother Hudson was diagnosed with similar tethered cord problems. Kaylie, Hudson and Landon regularly make trips down to Riley from their home in northwest Indiana for appointments. Their mother says the drive is worth it for the care they receive. “They listen. They genuinely care about your family,” says Holly. “Kaylie wasn’t even Dr. Smith’s patient yet and she helped guide us to the diagnosis she needed.”
Holly also gives credit to Riley Child Life Specialists for making each visit enjoyable. “They keep the kids calm in normal scary situations. When they are going under for MRIs or having an urodynamic study done that’s invasive, they are there for them,” she says.
Kaylie can now run, ride a bicycle and share her story at Riley Dance Marathons. She also raised $100 for Riley through “Kaylie’s Cupcakes,” where she assisted in making strawberry cupcakes and turned wrappers into red wagons. Holly says her family will continue to give back to the hospital that gave hope to them. “We’re just really thankful that we have Riley to go to as a family,” she says. “Without them, our kids wouldn’t be where they are today.”