Baby born with brain outside skull defies death to her loving mother’s joy

Arshdeep Sarao
By Arshdeep Sarao
January 9, 2017Stories
Baby born with brain outside skull defies death to her loving mother’s joy

In a rare congenital disorder there are few babies in the world born with brains outside their skull. They generally don’t survive and if they do they almost live a vegetable life. But in a rarer case of hope and miracle, little Bentley defied it all!

According to a story reported by People, Bentley was born with a rare congenital disorder called encephalocele in which a part of the brain remains outside the skull in a thin sack. When Bentley’s mother, Sierra was 20 weeks pregnant, doctors had asked her to abort Bentley after an ultrasound appointment.

Sierra and Bentley’s father, Dustin were saddened and shocked when doctors told them their baby most likely wouldn’t be born alive and that it’s a miracle that Sierra’s pregnancy has made it to 20 weeks. According to People, the parents were told by doctors that if their child survived after birth, he would remain a vegetable with no emotions and capacity to respond.

However abortion was something that Sierra, already a mother, to 3-year-old Beau couldn’t convince herself for. A night before the operation, her maternal instincts stirred her heart and gave her strength to bring Bentley to the world.

“My maternal instinct since his diagnosis had been telling me [the doctors] were wrong about him,” she told PEOPLE . And on 31 October, Bentley was born alive.


The parents were thrilled but they were also saddened. They didn’t know for how long Bentley would survive, so they stayed awake for 32 hours after he was born. They wanted to spend as much time as possible with him. They feared he may not survive the night.

Doctors had warned them that their precious baby may survive only for few weeks or few months. But Bentley defied it all to his parents joy!



Sierra and Dustin took Bentley to Boston Children’s Hospital. Specialists there closely monitored the mass of tissue on the back of his head. “Many encephalocele cases, you essentially just amputate the part of the brain that’s outside [of the head] because it’s not functional,” Boston Children’s neurosurgeon-on-chief Mark Proctor told People.

Bentley’s case however was tough because according to his doctors he had functional brain tissue in the sac outside the skull. “We made a great effort to preserve it all.”

The surgeons at Boston Children’s Hospital worked the complex surgery on 3D models before doing it on Bentley when he was 7 months old. And Bentley survived! The doctors performed the surgery but still managed to preserve 90% of his brain tissue. And now Dr. Proctor says he has “no reason to believe that [Bentley’s] brain won’t grow normally.”


Mommy Sierra is on cloud nine. She’s so relieved that she didn’t abort her baby. “People wonder how we could want to put him through so much, and what they don’t understand is you can feel his will to live. It’s like an aura that surrounds him… He truly is a fighter.”

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