At her 20-week ultrasound, Sierra Yoder learned that her unborn son had developed an encephalocele, a condition in which brain tissue bulges, unprotected, from an abnormal opening in the skull.
“They thought we might get an hour with him,” recalls Sierra. “We bought him one outfit.”
But Bentley survived the birth and began to thrive. “I couldn’t make him out any different from my other son,” says Sierra. “He was just a normal baby with something on the top of his head.”
Because the encephalocele contained unprotected brain tissue, the Yoders needed a solution--and fast, as the tissue could easily become infected. Doctors agreed that because Bentley appeared to be using the brain tissue in his encephalocele, the best course of action would be to send him to Boston Children's Hospital, where surgeons could remove the encephalocele while preserving and protecting Bentley's functioning brain tissue.
Before Bentley's arrival in Boston, Bentley's surgeons at Boston Children's Hospital worked with the Simulator Program (SIMPeds) to create customized, 3D-printed models of Bentley's anatomy using his CT and MRI scans.
“We’ve operated on a lot of encephaloceles in the past, but we’d never had one where there was so much brain tissue we felt was functional and had to be protected, put back in the cranium and covered up,” said Dr. Mark Proctor, Bentley's neurosurgeon. “It really presented a unique challenge.”
SIMPeds produced several models for the surgeons to practice on, including models of Bentley's skull and the encephalocele, showing the contours of the brain tissue and the fluid surrounding it. Since the encephalocele kept growing, SIMPeds provided final models just a week before surgery.
Bentley's surgery lasted less than five hours.
“He looks at us way more now and is starting to be more interactive. He fights tooth and nail to stay awake now — he doesn’t want to miss anything.”
Bentley returned home after having a shunt inserted to divert brain fluid to his abdomen.
“We’re waiting to see what he’ll give us, and we’ll be happy with anything he does give us," says Sierra. "I’m more overwhelmed now than I was in the beginning, because everything has worked out so well.”
“It’s like winning the lottery but better than that," added Bentley's dad, Dustin. "It’s an unbelievable feeling.”
Read Bentley's full story on Thriving.
Bentley was born with an encephalocele, a condition in which brain tissue emerges unprotected from an an opening in the skull. Boston Children's Hospital surgeons removed Bentley's encephalocele in 2016. The story was published internationally in outlets including the Boston Globe, the Washington Post and People magazine.