No parent ever plans to see their child wheeled away to the operating room — especially for brain surgery — but that became reality for a family from Oregon, Wis., when their son’s annual checkup took a turn from routine.
Rylan Ewing was nearly finished with his 6-year-old checkup when the nurse practitioner noticed what she believed was an abnormal curvature in his spine, a condition known as scoliosis. An X-ray confirmed Rylan had a 27-degree curve in the middle portion of his spine.
Rylan and his parents, Ali and Eric, were referred to Dr. Blaise Nemeth, a UW Health Kids orthopedist, who scheduled an MRI to get a clearer picture. Just as Ali was pulling into the driveway after the MRI, she got a phone call she won’t forget.
“Dr. Nemeth told me Rylan had a Chiari malformation, which I had never heard of,” she said. “He explained what it meant, that it was the likely cause of Rylan’s spinal curve and that he would need to be seen by a pediatric neurosurgeon.”
A Chiari malformation is an abnormality in which part of the cerebellum, the bottom section of the brain, pushes down into the spinal canal, almost like a wine stopper. Rylan was born with this condition, though it was not discovered until his 6-year appointment. Some children who have a Chiari, including Rylan, also develop a fluid-filled cyst, known as a syrinx, in their spinal cord.
“When I was told that he would need neurosurgery, I started to spiral,” Ali said. “I started to do the Google thing, which wasn't helpful because you often read about all the possible complications and worst-case scenarios.”
Much needed reassurance
Once Rylan and his parents had a chance to sit down with Dr. Andy Stadler, a UW Health Kids neurosurgeon, everyone began to feel more reassured.
Dr. Stadler explained that Rylan’s Chiari malformation and syrinx were obstructing the flow of cerebral spinal fluid, which is the fluid that surrounds and protects the brain and spinal cord. To correct the problem, Rylan would need decompression surgery to create more space for the fluid to flow freely.
“After surgery he told us Rylan would have a small incision on the back of his neck and need to rest, at home, for about two weeks but otherwise should be able to live a normal life,” Ali said. “Dr. Stadler’s approach was very comforting.”
For a 6-year-old about to have brain surgery, Rylan impressed many at the American Family Children’s Hospital with his inquisitiveness and engagement with the surgery process.
“Rylan is a ‘why’ kind of person,” said Amanda Schmoeger, a registered nurse who worked with the family in pediatric neurosurgery at the time. “It wasn’t enough to only explain what would happen, because he would follow up with a question about the next step.
“His questions reflected a level of engagement you don’t see in many kids that age. I found that so endearing.”
'We knew he was in the best hands'
When the day came for Ali and Eric to kiss their son goodbye before he was taken to the operating room in early 2024, they were surprised a sense of tranquility began to surface.
“I expected it was going to be awful having to sit and wait through the next few hours,” Ali said. “But when they took Rylan back, it was like a weird sense of calm set in because we knew he was in the best hands.
“We were done with our part as parents and now the people who could help him the most were going to take good care of him.”
About three hours later, Dr. Stadler emerged to say the surgery was over and successful. Rylan spent just two nights in the hospital, experiencing some expected nausea, which quickly settled down.
Just 10 days after surgery, Rylan returned to school on a shortened schedule. A few days later, he resumed a full-time schedule at school.
“Thinking back, I just have to say how grateful I am to Dr. Stadler, nurse Amanda and everyone who always took as much time as we needed to answer all our questions before and after surgery,” Ali said.
Rylan, now 8, is a happy third grader who enjoys reading, dinosaurs and sports like soccer, baseball and basketball.
When he hears about anyone else who had surgery, his competitive instincts perk up.
“But was it brain surgery?” Rylan will ask.
Two years removed from this experience, Ali advises other parents facing a similar situation to trust UW Health Kids experts.
“We trusted Dr. Stadler and everyone who works with him,” she said. “I think that played a big role in how brave Rylan was through this.
“The whole team was kind, yet also very confident. Even though this was a huge event for Rylan and our family, it was business as usual for them.”