Support Beyond Imagination: JJ’s Story

Connecticut Children’s new Westport Specialty Care Center already has a happy family.

Smiling infant in car seat.
Baby JJ, in his giggly and boisterous pose.

John B. Jr. — “JJ” to his family — is a giggly, boisterous 16-month-old from Stratford. Every couple months, he’ll visit the Neurosurgery team at the new Westport center, which opened its doors Dec. 15. This high-tech space is designed to feel welcoming and supportive for families, from constellations on the ceilings to woodland and ocean murals on the walls.

Mom Julianna remembers the moment that led JJ here. It began in the parking lot of a different health system, after a very different experience.



JJ was born with craniosynostosis, a condition where the skull bones fuse together too early. It was severe enough that, when he was 3 months old, his pediatrician urged Julianna and dad John to look into surgery. But the consultation at the other health system was a disaster.

As she walked out of the surgeon’s office, Julianna was fighting back tears. She called John from the parking lot. “I’m not giving our 3-month-old son to someone who doesn’t even have time to answer my questions,” she said.

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The family meets Connecticut Children’s neurosurgery and craniofacial team, and schedules surgery right away.

Instead, they made an appointment with Markus J. Bookland, MD, a pediatric neurosurgeon and craniofacial expert at Connecticut Children’s. Going in, Julianna felt scared and exhausted. By the time she left, she felt confident.

“I had all of these questions written down on my phone. Dr. Bookland and his nurse practitioner sat with me and answered all of them,” she says. “We went over some of them multiple times.”

Dr. Bookland also explained that, contrary to what the other surgeon said, they shouldn’t wait for surgery.

“We scheduled the procedure for the next week. There was no waiting game. It was seamless,” says Julianna.

Baby wearing cranio helmet, smiling in carseat.
One happy patient! JJ shortly after his skull-correcting procedure.

Dr. Bookland performed minimally invasive surgery on JJ’s skull, reshaping it so it wouldn’t put pressure on his growing brain. He and the Craniofacial team have kept close tabs on JJ ever since.

“As a first-time mom, you expect to worry about your child not sleeping through the night. You never expect your son will have something called craniosynostosis and need surgery,” says Julianna. “Connecticut Children’s helped us cope with all of that. We felt so safe there.”

They would need that “safe” feeling again from Connecticut Children’s after an unexpected, life-threatening turn of events.

By June, JJ was a few months from his 1st birthday, just about ready to graduate from the helmet he’d been sporting since his craniosynostosis surgery. Normally, he was a dimply, smiley bundle of energy. But this day, he just wasn’t himself. He was feverish and fussy, and couldn’t keep anything down. Then he stopped peeing and pooping. The doctor at the closest hospital told Julianna and John to take him to a pediatric emergency department.

“There was no question of which one,” says Julianna. “I put JJ in the car and drove to Connecticut Children’s.”

Things happened quickly from there: tests, an ultrasound on his belly, plans for emergency surgery. Part of JJ’s intestines had folded onto itself, a life-threatening condition called intussusception.

Julianna and John were stunned.

“I had thought he was probably just dehydrated from not eating,” says Julianna. “You never think, ‘I could lose my son here.’”

Family portrait with mother, father and baby in middle
Mom and Dad cannot thank Connecticut Children’s enough and are quick to recommend their care beyond imagination to any family who asks.

An experience beyond imagination leads to a happy ending.

Pediatric surgeon Christine Rader, MD, FACS, removed part of JJ’s intestine as well as his appendix, freeing the healthy portion of his intestine and clearing the blockage.

Baby outside picking wildflowers
JJ, content and in his element.

After, she visited with Julianna and John to explain what they’d discovered during surgery. By this time, it was well after 3 a.m.

“Dr. Rader could tell I was sleep deprived. She would stop and check, ‘Do you understand what I’m saying? Need me to re-explain that?’” says Julianna.

“Connecticut Children’s saw my son as a patient who needed help, and me as a mom who needed to know that she’s supported too. They had my back.”

JJ spent 10 days in the hospital recovering from his emergency surgery in June. By the time he followed up with Dr. Rader a few weeks later, he was completely recovered. He doesn’t need any more follow-ups with the Pediatric Surgery team — but if he did, he could come to the new Westport Specialty Care Center for those too. The center brings nearly 20 specialties under one roof, from Cardiology to same-day appointments for Orthopedics and Sports Medicine.

Julianna is quick to recommend Connecticut Children’s to anyone who asks.

“We really believe that if it wasn’t for Connecticut Children’s, JJ may not be here,” she says. “Any time a family asks, ‘How was your experience?’ I say it was beyond imagination.”

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