Meet Kid Captain Bentley Steven

When Bentley Steven was 2 years old he started having serious headaches, ones his mother, Ashley, knew were painful.

“He would be playing like a normal 2 year old and then out of nowhere, he would grab the back of his head and start screaming and fall to the ground,” Ashley recalls. “I would take Bentley to the doctor or urgent care, but by the time we would get (there), the episode would be over and the doctors would tell me that he was just fine, completely healthy.”

Even her husband, Mike, had his doubts that anything was wrong, until he witnessed one of the episodes himself.

“Mike thought I was crazy,” Ashley recalls. “And then finally he saw one.”

Mike remembers his son playing in an inflatable swimming pool with a plastic slide when the episode struck.

“He would crawl up the slide, go down, splash in the water, get out, run around and keep doing that,” Mike recalls. “I remember walking up the sidewalk and he just keeled over the side of the pool.

He started screaming and falling and grabbing his head. And right before that, he was just having fun like any other little kid.”

As summer progressed, Bentley’s headaches worsened.

“One day... he had a terrible headache and the mom in me had finally had enough,” Ashley remembers. “I knew there was something wrong with my son and I had to help him. I packed him up and took him to the emergency room.”

Before Bentley was discharged from the Waterloo hospital, their pediatrician ordered an MRI. The imaging test led to the diagnosis of Chiari malformation. Bentley was immediately transferred to University of Iowa Stead Family Children’s Hospital.

He would be playing like a normal 2 year old and then out of nowhere, he would grab the back of his head and start screaming and fall to the ground.

“By the time we had reached Iowa City, I was a mess,” Ashley recalls. “My husband was out of town and I felt like I needed to talk to someone who could help me understand just what this Chiari was. I found comfort in the hospital staff.”

Bentley’s care team scheduled him for decompression surgery.

“Basically, the base of the skull, they remove a little part of that, and it gives your brain some more room to expand,” Mike explains. “There’s a channel that the spinal fluid travels through, to go from the brain down the spinal column; there’s not enough room in patients with Chiari. Normally when you’re laying down or doing some sort of activity like that, then you go to sit up quick, the fluid can’t travel like it’s supposed to and that’s what causes the headache.”

While Bentley made it through the 12-hour surgery, he developed bacterial meningitis and the hospital’s infectious diseases team was brought into the fold.

His health returned, but two years later, when he was 4, Bentley’s Chiari symptoms returned and he underwent another decompression surgery.

Bentley’s parents were grateful for the expertise at Stead Family Children’s Hospital.

“They took the time to make sure we understood what was happening with our child and how they were going to help him,” Ashley recalls. “We truly felt like we were part of a family during our stay.”

Now 9, Bentley races dirt bikes and enjoys soccer and other sports.

“He’s a very caring, tender-hearted boy,” Ashley adds. “He is really concerned that everyone’s happy, and he’s made people happy.”