Aria Trombley was only a few months old when she was diagnosed with craniosynostosis.
Her parents, Mike and Kim, had been concerned about the shape of Aria’s head since birth.
“Her head shape was very strange. It was presenting really flat and tall,” said Kim. “At first we thought it could have been because she’s a twin and her brother may have crowded her in utero."
With a diagnosis in hand, they learned all they could about the rare condition which interferes with the normal growth of the brain and skull.
For most newborns, the skull bones remain open, allowing for the brain to grow in the first few years of life. In craniosynostosis, however, two or more bones of the skull grow together, which causes problems with head growth and could lead to serious complications if left untreated, including dangerous pressure on the brain and head deformity.
The good news, they discovered, is that many complications can be avoided with early intervention. So with early intervention as their goal, Mike and Kim spoke with their local pediatrician, expanded their research and discovered Cincinnati Children’s.
Posting a message about craniosynostosis on an online support group, the concerned parents asked if others had been to Cincinnati Children’s and what their experiences were like.
Then the responses came pouring in.
“All of a sudden, there were all these moms on there and they showed pictures of their kiddos,” said Kim. “And they all said, ‘If you can, request Dr. Pan.’ ”
After a not-so-pleasant experience in their home state of Indiana, the family began feeling a renewed sense of hope. It was an easy decision to travel from their home in Fort Wayne so that Aria could have her cranial vault remodeling surgery performed by our pediatric experts: craniofacial plastic surgeon, Brian S. Pan, MD, FACS, FAAP, and neurosurgeon Charles B. Stevenson, MD, FAANS, FACS, FAAP.
“We met with Dr. Pan and Dr. Stevenson and it was a night-and-day experience," said Kim. “The first [hospital’s] team was kind of dismissive of talking to Aria, it was like she was kind of there. Whereas Dr. Pan and Dr. Stevenson came in and talked to her. They played with her, building rapport and treating her like an individual and honoring her with dignity and respect.”
It was reassuring and obvious to see the friendly collaboration between the two doctors, added Mike: “You could tell that they liked each other and they worked really well together.”
When they first saw Aria, both Pan and Stevenson were working together in a joint clinic treating patients with craniosynostosis and other congenital and acquired skull abnormalities. The two continue to work together, but now treat patients like Aria in the newly formed Craniosynostosis and Cranial Reconstruction Center. Stevenson is a neurosurgeon and Pan is co-director with neurosurgeon Jesse Skoch, MD.
It was during this first meeting that the Trombleys knew they had made the right decision. They wanted several things: what was best for their daughter, answers to their many questions, and treatment for Aria as quickly as possible.
But more than anything, they wanted hope – which they found at Cincinnati Children’s.
“They’ve given her a whole different experience and opportunity in life than what she would have at the other place,” said Mike.
At Cincinnati Children’s, “They were always very open, and happy actually, to answer our questions and talk with us. And it wasn’t ever a talking down. It was a more respectful partnership,” he added.
For Pan and Stevenson, respect is a core value and they both make sure families feel included as part of the care team.
Meeting with families like the Trombleys, Pan and Stevenson take the time to answer all questions, carefully describe recommended surgeries and outline the timeline of recovery and care.
In particular, Kim and Mike were grateful for the detailed 3D modeling that showed how Aria’s appearance would change over time from the cranial vault remodeling surgery.
“The surgical planning was fabulous because they could show us exactly where the cuts were being made, but also the projected look of her skull,” said Kim. “So we, as parents, could prepare ourselves for what our daughter would look like, because in every cranial surgery, a kiddo changes. So preparing for that and being ready for it, I thought that was amazing.”
According to Veronika Elsaesser, RN coordinator for the center, this unique offering is what separates Cincinnati Children’s from other pediatric hospitals – allowing our surgeons to carefully plan out templates for skull reconstruction prior to entering the operating room (OR).
“It offers peace of mind to families that are going through this major surgery and it can also cut down on OR time,” said Elsaesser.
Collaboration between staff, putting the family first and providing patients with the best possible care are the aims of the center, adds Pan.
“We offer a patient / family experience that would be expected from one of the nation’s top pediatric institutions. Our multidisciplinary approach combining the latest technology allows us to achieve the outcomes our patients deserve,” he said.
“It’s been beautiful to see her progress and to see her thrive, because she had all the right people, in the right places, at the right time when she needed them,” said Kim.
Aria, who is now 2, is doing well and has graduated from physical therapy, occupational therapy and speech therapy. She returns to Cincinnati as needed for appointments, where her skull will be monitored until she is 6 years old.
Thinking back on their journey, Kim and Mike are thankful for the great team they had throughout the process. They are convinced Aria’s outcome would not have been possible without the close collaboration between Pan and Stevenson and their local pediatrician back home, who initially suggested Cincinnati Children’s.
“They were all there to listen to us and to reassure us that everything is OK," said Mike. “We want to let other parents know that there is hope.”
And if you don’t have hope, don’t settle for anything less, advises Kim: “Get the right people around you. Get the right team. And if you don’t have someone who is telling you that there is hope, that’s not the person who you want fighting for your daughter in the OR.
“You want the person who you know is going to do everything that they can to help your child. That’s why we love Cincinnati. I feel like all of her doctors treat her like they would treat their own children.”
(Published May 2021)