“He Has His Life Back”: Ben’s Story

“When the results came back, she called us into her office within hours, and had us on the phone with the neurosurgeon’s office within minutes,” says Ben’s mom, Devin. “Once we got to Connecticut Children's, everything went really quickly.”

“He loved every doctor and nurse, every X-ray tech, everyone”

Ben, who is 16 years old, was diagnosed with an advanced form of a Chiari malformation: At the back of his skull, part of his brain was squeezing out to the spinal canal, pressing on his brain stem. His symptoms were the result of pressure on parts of his brain and spinal cord. Ben’s doctors think he was probably born with the condition; it just took awhile for the symptoms to show up. “Once they did show up, they showed up fast,” says Devin.

There’s a procedure to correct the problem, but it wasn’t as simple as just scheduling Ben for brain surgery. He’d lost a lot of weight, so he wasn’t strong enough for surgery. To complicate matters, the pressure on his brain stem was affecting his ability to breathe and swallow, a dangerous problem.

Getting him ready for surgery, safely, required the coordinated efforts of numerous specialists: Connecticut Children's Divisions of Neurosurgery, Ear, Nose & Throat (ENT), Gastroenterology, Pulmonary Medicine – and others. The Pediatric Surgery team placed a feeding tube in his stomach to get him additional nutrients, helping him put on the weight he needed over the course of a month. The Aerodigestive team (part of the Division of ENT), led by Nicole Murray, MD, closely monitored his ability to swallow.

“This is a great example of beautiful collaboration among teams,” says Dr. Murray. “Everyone worked together to anticipate trouble and plan for it, and do all the right things for Ben.”

The slew of tests and preparations could have been overwhelming for Ben and his family. But as an integrated health system – ranked among the nation’s best by U.S. News & World Report – Connecticut Children's made the experience as easy as possible.

Ben, doing great as he recovers from surgery.

“Everyone at Connecticut Children's was awesome,” says Ben. “All the help made me feel so much better.”

“They explained everything really well. I never felt confused. I never felt rushed,” says Devin. “They also knew how to treat Ben. He’s 16 – he’s not a little kid. They talked to him in an age-appropriate way. They knew how to joke around with him and make him laugh. He loved every doctor and nurse, every X-ray tech, everyone he came in contact with.”

When it was finally time for the surgery, Ben didn’t flinch. “He’d already been through so much, but he didn’t complain,” says Devin.

“It was nerve-wracking, but I knew it was something positive that would help me,” says Ben.

“Connecticut Children's completely changed his life”

Jonathan Martin, MD, FAANS, division head of Neurosurgery, performed what’s known as Chiari decompression surgery on Ben. The surgical team took out a small part of Ben’s skull bone and sewed in a patch of material, creating more space for his brain tissue.

The procedure was a success – and Ben shouldn’t ever need another one. He went home with the support of a multidisciplinary team, which grew to include experts in Physical Therapy, Occupational Therapy and Speech-Language Pathology. Within weeks, he went from using a walker to walking on his own. Within months, he had his feeding tube removed, because he was once again able to eat and swallow safely. He hasn’t had a headache since the day of surgery.

“At Connecticut Children's, we’re very fortunate to have large care teams that work collaboratively and deliver outstanding care to children,” says Dr. Martin. “Ben’s case has been an example of that. He’s a remarkable young man, and we expect great things from him.”

For Ben, this summer couldn’t be more different from last summer. Video games are back on the table. So are taco nights, and trips with his family, and arguing with his sister over chores.

For a long time, these simple activities – and the healthy future they represented – seemed beyond imagination. Now, they’re back. Ben’s a healthy teenager again, with his whole life ahead of him.

“I can wake up without headaches. I can walk without falling. I can go to restaurants with my family,” says Ben. He’s noticed a difference in his mood, too: “I felt more happy after I got the surgery,” he says. He feels like himself.

“Connecticut Children's completely changed his life,” says Devin. “He has his life back.”