Katelyn and Eric McGlone had been parents for exactly five weeks and one day when they got the news: Their newborn son, Jack, needed surgery on his skull for a condition called craniosynostosis.
They were stunned, and scared. Jack was just so tiny. They were still getting the hang of being parents. How could the three of them get through this?
"Cranio-what?"
“It was very emotional,” Katelyn remembers. “It all sounded so foreign to us — ‘cranio-what?’ We didn’t know what to think.”
Just when they needed reassurance, it arrived in the form of a video call from Jonathan Martin, MD, FAANS, who leads Connecticut Children’s division of Neurosurgery.
Dr. Martin told them that Connecticut Children’s specializes in a minimally invasive approach for younger infants like Jack — one of the region’s only pediatric health systems that does. It would mean a much easier surgery and recovery. Baby Jack wouldn’t even need a CT scan.
“That comforted us,” says Eric. “We knew we’d rather do something minimally invasive.”
What is minimally invasive surgery for craniosynostosis?
At birth, the bones in a baby’s skull are still forming and coming together, the reason for that famous soft spot on a newborn’s head. But about 1 out of 2,000 babies are born with craniosynostosis, a condition where the skull bones fuse together too quickly. If left untreated, it can change the shape of a child’s skull dramatically, and impact their confidence and social interactions throughout life too.
Once a child is older than 6 months, the usual solution is open surgery with a long incision across the skull, multiple hours of anesthesia, and several days in the hospital — which can be a lot for patients and parents to go through.
Thanks to new technology and techniques, younger infants like Jack now have another option: Because of how adaptable the skull and brain still are in these early months of life, a skilled pediatric neurosurgeon can correct the issue with just a few small incisions. Often, the procedure itself takes less than an hour.
“There are huge benefits to doing a minimally invasive surgery for craniosynostosis. Shorter surgery, shorter recovery, less medications, low risk of blood transfusion,” explains Dr. Martin.
To make sure babies can get the procedure while they still meet the age requirement, Connecticut Children’s also offers rapid-access scheduling, getting patients and families in quickly for diagnosis and the surgery itself.
Because of Connecticut Children’s many locations, this care is close by for families wherever they live in Connecticut — from the main campus in Hartford to the Westport Specialty Care Center, which opened in 2022 in Fairfield County.
“This minimally invasive approach is such an important option for babies with craniosynostosis,” says Dr. Martin. “Wherever families live, we want them to know they have convenient, rapid access to it at Connecticut Children’s.”
“No question was left unanswered”
Leading up to Baby Jack’s surgery, Connecticut Children’s introduced Katelyn and Eric to another mom and dad who’d been in their shoes — twice, actually, for their two daughters, now ages 5 and 7. They all met one day by video chat, parents to parents.
“That was really cool, having already heard from Dr. Martin and then getting the perspective of another family,” says Eric.
They also had regular contact with Janine Rose, BSN, RN, their go-to at Connecticut Children’s and a former DAISY Award honoree for extraordinary nurses. Between all of it, they felt fully prepared for what to expect when they arrived at Connecticut Children’s for Jack’s surgery.
Still, they were struck by the compassion and support they experienced. Before the procedure, Dr. Martin went out of his way to reassure them and patiently answer every nervous question. During surgery, the team sent regular text updates from the operating room.
“We can’t say enough good things about how Connecticut Children’s treated us as people, and as new parents,” says Eric. “Starting right from check-in at the security desk, we were always being communicated with. No question was left unanswered.”
The surgery went perfectly. By the next day, Jack was ready to come home.
For Katelyn and Eric, the previous day and night had been a bit of a blur. But that morning was unforgettable.
“It’s the morning after Jack’s surgery, and he’s smiling,” Katelyn says. “That’s one thing I do remember: Seeing that smile.”
We can’t say enough good things about how Connecticut Children’s treated us as people, and as new parents. Starting right from check-in at the security desk, we were always being communicated with. No question was left unanswered.
Eric,
Jack's Dad
"He lights up every room"
Baby Jack is now toddler Jack, about to turn two years old. He has a big personality to go with his big smile.
“He’s always laughing and smiling,” says Katelyn. “He lights up every room.”
He’s breezing through his developmental milestones under the watchful eye of Connecticut Children’s occupational therapy and neonatology teams, a standard part of follow-up for craniosynostosis. He’s doing so well, he’ll only need to check in with Dr. Martin once a year, plus occasional eye checkups with the ophthalmology team.
For Katelyn and Eric, it’s the outcome they hoped for — and an overall care experience that went beyond imagination.
“Going through this made us appreciate how lucky we are,” says Katelyn. “We’re so lucky that Jack’s condition was treatable and that his doctors caught it so quickly. And we feel very fortunate that Connecticut Children’s offers the minimally invasive procedure.”
“There are a lot of options out there,” says Eric. “We were fortunate to have Connecticut Children’s.”
Craniosynostosis... Explained
1 out of 2,000 babies are born with craniosynostosis, a condition where the skull bones fuse together too quickly. If left untreated, it can change the shape of a child’s skull dramatically.
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