‘We had no hope’: The Amazing Story of The Baby Born with His Brain Outside His Skull

0 June 12, 2017 By Dang

Bentley Yoder was born with encephalocele, meaning much of his brain was outside his skull. No one thought Bentley would live, but the little boy proved to be a fighter. (Boston Children’s Hospital)

Right on schedule, Sierra Yoder went into labor.

It was Halloween night, and she was wearing an orange T-shirt with a pumpkin covering her belly. It was embellished with her new son’s name and his expected birth date: “Bentley. Due 10/31/15.”

Yoder and her husband, Dustin Yoder, hopped into the car and headed for the hospital — but without any bottles, without any diapers, without a car seat in which to bring their newborn son home.

They had packed only a onesie, with matching pants and fuzzy socks.

They were prepared to bury him in it very soon.

Dustin and Sierra Yoder, from Sugarcreek, a small town in Ohio, knew that Bentley had a rare condition in which his brain was growing outside his skull. Sierra Yoder said doctors told them that their son would not live long past his birth. If he didn’t die, she said doctors warned, he would live with no cognitive function.

She said she and her husband were urged to consider abortion — and they did — but the night before the procedure, they chose to continue the pregnancy.So,Doctors gave them brochures for funeral homes in the area, including information on burials and cremations, Yoder said. She said she wanted him to be cremated, but she could not think about his death before his birth.

Now, here they were, only hours from the delivery. They planned to meet their son. Then say goodbye.

“We were excited to meet him, even if it was only for an hour,” Sierra Yoder told The Washington Post. “We were just relieved he made it that far and we would get to meet him, living and breathing. He was perfect,” Sierra Yoder said. “It really didn’t matter how long we had. We were just thankful we got to hold him.

“But he was crying and he was breathing and he was moving,” she added. “We were all just staring at him. For the first four or five hours of his life, we were all just waiting for something to happen.”

But it didn’t. Bentley, his parents said, had other plans.

Now 7 months old, he is alive and alert after surgeons at Boston Children’s Hospital put together a plan for what one called the “granddaddy” of cases to place his brain back into his cranium.

Almost a month after Bentley’s brain surgery, his mother said, he is now able to hold up his head. He’s eating. He’s smiling. He’s jabbering.

“His hair is growing back in,” Sierra Yoder said. “He looks like his brother now.”

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