During a 20-week ultrasound, doctors told Bentley Yoder’s parents that their son was “incompatible with life,” and that he had a 0 percent chance of survival. Devastated, the Ohio parents considered terminating the pregnancy, but ultimately they decided to carry Bently to term.

“All the way through, I just kept having the feeling that it’s going to be OK, it’s going to be all right,” Dustin Yoder, Bentley’s father, said in a post on Thriving, a Boston Children’s Hospital blog.

In the ultrasound, doctors had detected that brain tissue was bulging out of an opening in Bentley’s skull and diagnosed him with encephalocele. The condition is a rare neural tube defect that occurs when the tube does not close completely during pregnancy. According to the Centers for Disease Control and Prevention (CDC), the condition occurs in one out of 10,000 babies born in the United States each year.

“I specifically remember asking, ‘Is there any chance he could survive?’ They said no— that in the best-case scenario, he’s going to be a vegetable,” Sierra Yoder, Bentley’s mother, said in the blog post. “They made it out like I was going to lose him at any point.”

The Yoders entered the birth excited for the limited time they were expected to have with their son and picked out an outfit to bury him in, but Bentley had other plans. The staff sent the family home with hospice but Bentley was feeding from the bottle, cooing and crying like any other child.

More on this...

“I couldn’t make him out any different from my other son,” Sierra said, according to the blog post. “He was just a normal baby with something on the top of his head.”

The sac on Bentley’s head continue to grow as it filled with fluid, but doctors needed to figure out whether he was using any of the brain tissue before attempting to remove it. They were referred to Boston Children’s Hospital, where Dr. John Meara, a plastic surgeon of the Cleft and Craniofacial Center, determined they could safely operate on Bentley.

Along with neurosurgeon Dr. Mark Proctor, Meara planned to drain the fluid, expand Bentley’s skull and replace the brain tissue that was being used. They used Boston Children’s Simulator Program to produce several 3-D models of Bentley’s skull to plan the procedure.

“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,” Proctor said in the blog post. “It really presented a unique challenge.”

The procedure lasted five hours, and doctors saved a majority of the brain tissue. However, fluid accumulated in Bentley’s brain, causing him to become limp and lethargic two days later. Having prepared for this situation, doctors implanted a drain and a permanent shunt to divert the fluid to Bentley’s abdomen.

“The more the shunt was working, the better he was starting to get,” Sierra said in the blog post. “He looks at us way more now and is starting to be more interactive. He fights tooth and nail to stay away now— he doesn’t want to miss anything.”

Doctors aren’t sure what the future holds for Bentley and say it’s unlikely he will develop like other children. Currently, he requires no special care and will be followed by a neurologist near the family’s home in Ohio.

“I am certainly optimistic that he could have a rewarding life,” Proctor said in the blog post.