Support Beyond Imagination: JJ’s Story

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.

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.

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.’”

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.

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.

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.