patient story

patient name: Stevie Kesner

age: 8

seen in: neurosurgery/plastics

providers: Rob Lober, MD, PhD, FAANS, Salim Mancho, DO, FACS

Stevie is a bright elementary schooler with a knack for reading and music and isn’t letting a rare diagnosis hold him back. Diagnosed very young with a rare genetic condition, Stevie’s life began with surgeries and specialist visits. Today, Stevie is thriving!

an unexpected diagnosis 

The day after Stevie was born, his NICU care team noticed his head shape looked a little off. They recommended Stevie have imaging to get a closer look and found he had craniosynostosis, where the bones in a baby’s skull fuse too early. Stevie was later diagnosed with Muenke syndrome — a rare genetic condition that causes differences in the skull and face. Stevie spent about a month in the NICU before meeting Rob Lober, MD, PhD, FAANS, pediatric neurosurgeon at Dayton Children’s.

“It was scary,” Emily Kesner, Stevie’s mom recalled, “but it was comforting to sit down with Dr. Lober, get our questions answered, and make a plan for what we could do to help him grow.”

Stevie's first surgery

At just five months old, Stevie underwent his first surgery with Dr. Lober and Salim Mancho, DO, FACS, plastic surgeon. Together with their teams, they carefully removed two strips of bone from Stevie’s skull to make space for his brain to grow. After the surgery, Stevie wore a specialized, custom helmet for about 18 months to help shape his head so his brain and skull could grow the way they were supposed to. His family still has the helmets as a reminder of how far he’s come — including one decorated with his favorite team, Ohio State!

getting hearing aids

Around age four, Stevie’s parents noticed signs of sudden hearing loss. At first, they thought it was an ear infection. They went to see Dr. Lober, who suspected it may be related to Stevie’s craniosynostosis and ordered a CT scan. The scan found fluid behind Stevie’s eardrum, not a typical place for fluid to be, so Dr. Lober referred Stevie to pediatric ENT (ears, nose and throat). ENT recommended ear tubes and referred Stevie to audiology for a hearing check.

Audiology did a hearing test with Stevie and found that he had moderate hearing loss. Stevie then got ear tubes to relieve fluid buildup and hearing aids to help with the hearing loss. Being able to hear better is the biggest perk of Stevie’s hearing aids, but for an 8-year-old, getting to pick the color is also fun.

“It’s cool that I get to choose. It’s hard to pick; there’s so many colors to pick from. And I figured out that they have a glitter color too!” Stevie says.

more than medicine: caring for patients like family

Through every step of Stevie’s journey, his care team has been committed to supporting him and his family, and making sure they don’t feel alone.

Beyond taking care of Stevie’s hearing aid needs, the audiology team also connects with Stevie’s audiologist at school to make sure everyone is on the same page. Stevie no longer sees Dr. Lober and Dr. Mancho regularly, but they are ready to support when Stevie and his parents need them.

“They said, sometime something’s going to happen; Stevie might hit his head and you might panic, and you call us when that happens,” Emily shared. “It’s so nice having that safety net and a team of people we can call on.”

As a nurse at Dayton Children’s, Emily knows the above and beyond care Dayton Children’s provides. As a mom, what stood out most was how the team cared for her.

“I appreciate them treating me and talking with me like a mom, not just a fellow nurse or employee,” she said. “They’re still so wonderful and ask about Stevie when they see me. It’s nice to know they still think about him, and they’re here for us if we need anything.

defying the odds: beyond the diagnosis

From the beginning, Stevie's family was told that children with Muenke syndrome might face developmental delays or learning challenges. Stevie’s parents were scared to hear that, but hopeful that Stevie would be able to do things just like other kids his age.

With early support, therapy, and consistent care, Stevie not only kept up — he excelled!

“He recently tested gifted in reading,” his mom shared. "So that has been cool to watch him break through those barriers and do more than we ever thought he could."

Though Stevie’s journey continues, and he may need another procedure in high school, his family feels comfort knowing they have a trusted, caring team beside them every step.

Through every challenge, Stevie continues to pursue his passions: playing piano, drums, and ukulele; spending time with his family and siblings; and nurturing a love for reading. 

“Most people won’t ever know what he’s been through,” Emily said. “But he doesn’t let it bother him. He’s chill, he’s focused, and he’s doing his thing.”

And one day, that “thing” might be caring for others as a doctor or working in the hospital, just like the compassionate team who went above and beyond to care for him!