Submitted photo Callan Dockter, 4, son of Jennifer & Brandon Dockter, of Rugby, received a diagnosis of craniosynostosis on May 1.

Like most parents of preschoolers, Jennifer Dockter loves to talk about her son: “Callan is an incredibly energetic 4-year-old who enjoys big machines, and plays air guitar to Johnny Cash music.”

The Rugby mom smiles as she describes Callan’s “Best Friend in the Whole Wide World.” “That’s his Papa Gary,” she says, mentioning Grandpa Gary Rose.

Dockter seems to welcome the opportunity for a grin and a break from the battles Callan and his family have faced since his diagnosis with craniosynostosis May 1.

“We knew when he was about 6 months old that something wasn’t right,” Dockter recalled. “He had developed a ridge on the top of his head from ear to ear that went across like a headband. He went to his pediatrician, and we asked about it, and they said, ‘Well, he’s still young yet; don’t worry about it. It’s probably still something from birth. It’ll even out, it’ll be fine’.”

But Jennifer and her husband, Brandon Dockter, noticed no improvement.

“Then, last year,” Jennifer continued, “We began to see a large bump develop, and then an indentation where the ridge had been. We started to get really concerned at that point, because we didn’t know if we were dealing with something really incredibly wrong such as a tumor we didn’t know what that was.”

More visits to the pediatrician followed. ” We did a CT scan on May 1 of this year,” Dockter continued. “The pediatrician called and said, ‘It’s just the way his head is; it’s just the way he’s going to be.’ That didn’t set well with me, either. So, I got a copy of the CT report myself. It said right on there, ‘craniosynostosis of the skull.'”

Those words touched off a flurry of research, questions, and connections made with other parents of children with Callan’s condition, which according to medical researchers occurs in 1 in 2000 live births.

Dockter says because the condition is not treated surgically in North Dakota hospitals, Medicaid covered a visit to the Mayo Clinic in Rochester, MN.

Dockter said the visit left her family disappointed, particularly because she felt “rushed” during the 15-minute consultation. She described the surgeon’s attitude as “passive.”

“I also found out craniofacial surgery isn’t their expertise, and they only do the surgery on kids under the age of 1 anyway, which is typically when they do surgeries for this condition, because it’s usually caught before the age of 1, and it’s treated, and it’s not as invasive at that point, because their brain is smaller and there’s a lot more room to work with,” Dockter noted. “It’s not as dangerous,”

“But Callan is 4.”

More research and communication with parents from all parts of the country and the Children’s Craniofacial Association followed, and, Dockter said, “They led us to Dr. Fearon in Texas. He’s the most amazing doctor, especially after dealing with so many different types (of people) and personalities out there.”

“He came out to the waiting room to greet us; he played with toys with Callan; he spent a good hour to hour and a half with us, and then the rest of his staff spends about another hour with us just talking us through the process, and the financials, and answering questions that we have,” Dockter added.

“We were there for a really long time, and there was no way he was rushing us out of there. He said, ‘you stay here as long as you need to for me to answer your questions, and if you have any after you leave here, here’s my personal cell phone number, here’s my personal email address, send them to me.'”

The Dockters came away with a detailed diagnosis for their son. Dr. Fearon wrote what would become the first in a series of letters to Medicaid of North Dakota, explaining Callan’s sagittal craniosynostosis, and the surgery he needed to avoid lifelong problems caused by pressure on the brain from a skull that closed too soon.

“His skull is going to be broken into multiple pieces that’s done by a neurosurgeon,” Dockter said. ” They remove his scalp. It’s so gruesome it turns my stomach just to describe it; and when it’s done on your own child, you just” her voice trailed away as she shuddered. “Anyway, they remove the scalp and break the skull into multiple pieces. And then, that’s when the craniofacial surgeon takes over. He shaves the bone in half; makes and creates a new skull, fits the pieces back together, and then the neurosurgeon takes it back, and they reshape his brain in his skull cavity, and fit the pieces around it, to give his brain room to grow.”

Without the surgery, Callan could face seizures, vision, hearing and breathing problems. One problem in craniosynostosis patients is a speech delay which Callan already has.

But the Medicaid denials continue. Dockter said although she collects denial letters and documents conversations, the latest denial letter was sent electronically to Dr. Fearon,

To help with the red tape, Dockter said she’s contacted the office of Gov. Doug Burgum, US Representative Kevin Cramer, and US Senators Heidi Heitkamp and John Hoeven. She says she’s even contacted the White House, where she received a polite response, but little else.

To help raise funds needed for the $198,000 surgery Callan needs, friends of the Dockter family have set up a Go Fund Me page, and opened an account at North Star Community Credit Union. “It’s under the Callan Dockter Benefit,” Dockter said.

Family friend Kate Halvorson has organized a benefit breakfast and silent auction for Callan at the Rugby Eagles Hall Sunday from 7 a.m. to 2 p.m.

“We’re having a build your own breakfast burrito bar with bacon, eggs, hash browns, sausage, onions, anything you want to put on it, or you can have it all separately, too,” Dockter said. “The silent auction has so many amazing things coming in, too really expensive, high quality items.”

Although fundraising efforts should put a dent in Callan’s medical bills, Dockter expects the Medicaid battles to continue.

“When a child has an illness, whether it be your child, or yourself, you’re dealing with so much stress and uncertainty, you shouldn’t have to fight your health insurance provider to get help on top of that,” Dockter said. “The system is so broken, it needs to be fixed.”