WKYT Investigates: UK doctor says DIPG cases in her hometown region prompted concern among specialists

LEXINGTON, Ky. (WKYT) - The commonwealth and the Centers for Disease Control and Prevention are investigating a number of cases of a rare and deadly pediatric brain cancer in Eastern Kentucky.

The disease, diffuse intrinsic pontine glioma, or DIPG, forms a tumor in the brainstem, according to Dr. Randaline Barnett, director of pediatric neurosurgery at UK HealthCare.

“DIPG, I can say as a neurosurgeon and as a mom, it’s my worst fear,” Barnett said.

Tumor is inoperable

Barnett said the tumor cannot be surgically removed because of its location.

“It’s inoperable because of the location and the nature of the tumor,” Barnett said. “That’s the area that controls our ability to walk, talk, eat, swallow, breathe — for our heart to function. There’s no way to preserve that while taking the tumor out.”

There is no cure for DIPG. The median survival time is eight to 11 months from diagnosis, Barnett said.

“Most of our children die within a year,” Barnett said.

Case numbers raise concern

Kentucky typically sees two to three cases of DIPG each year. The state and the CDC are investigating 10 cases dating back to 2024 in Eastern Kentucky alone.

Barnett, who is from Eastern Kentucky, was asked about her reaction to the number of cases being investigated in the region.

“When I got here, working with two of our pediatric oncologists, we all had concerns that what we were seeing clinically was not normal,” Barnett said. “We’ve started interacting more with our researchers here at UK, and now we’re discussing this with folks in our government to help battle this.”