Baby born with his brain outside his skull is fighting an inspiring battle

  • Sierra and Dustin Yoder  were encouraged to have an abortion because of a birth defect with their unborn child, Bentley
  • Bentley was born with Encephlocele, where a large portion of his brain is outside the his skull
  • A breakthrough surgery was done on Bentley to place his brain back in the cranium. He continues to survive.

22 weeks into her pregnancy and couple Sierra and Dustin Yoder were told that their child had a rare birth defect. They were told that their unborn child may not survive long and they were encouraged to consider abortion.

The couple told The Mirror that medical experts who spoke with them said their unborn child had Encephalocele which could lead to the deformity of the child’s skull. The condition makes the skull “incompatible with life.”

Despite this, Sierra and Dustin decided to go through with the pregnancy. They wanted their child to have a chance at survival, no matter how slim.

“From what they were telling us, there was no possible way that he was ever going to survive,” Sierra said.

Their child, Bentley, was born on November 1 last year and to this day, he continues to fight an inspiring battle to stay alive. He was born with a large portion of his brain formed outside his skull.

Doctors cautioned the parents that Bentley would not live for long but 22 weeks after his birth, Bentley continued to live and make progress.

A huge credit goes to the doctors of the Boston Children’s Hospital, particularly surgeon Dr. John Meara who was certain that Bentley’s life was not beyond saving.

He and a team of surgeons put together a plan to place Bentley’s brain back into his cranium.

“It was a life-saving procedure. But it will not restore a normal life.” Mark Proctor, neurosurgeon in chief at Boston Children’s, said.

They used a 3D printer to map out the child’s skull beforehand. This allowed room for practice before the operation.

Just last month, in May, they performed the surgery on Bentley to make the hole in his skull larger.

At that time, Bentley had a pouch protruding from his skull which contained a significant portion of his brain that controlled motor function and problem solving. Some part of it also controlled vision.

Bentley survived the surgery and is now 7 months old, doing quite well, living at home with his parents and older brother, Beau.

It is still unknown what the long term effects of his condition will have on his life but he and his family are taking it one day at a time.

“All I have to do is look at him to keep going when the motivation isn’t really there,” Dustin said.

The Sydney Morning Herald reported that Encephalocele is a rare congenital disorder in which a baby’s brain herniates from the skull in the womb and the bones do not properly form around it. Based on the National Organisation of Rare Disorders, the portion of the brain that sits outside the skull is usually covered by thin skin or membranes.