The odds were stacked against a little boy who was born with his brain outside his skull, but he is defying all of them, thanks to a groundbreaking procedure performed at Boston Children’s Hospital.
Sierra Yoder and her husband, Dustin, were sent to a neurologist after Sierra’s 22-week ultrasound. She was soon shocked to learn that the child growing inside her had encephalocele, which causes all or part of the brain to form outside the skull, usually in a “sac-like protrusion.” Encephalocele affects 1 in every 10,000 babies.
The Sugarcreek, Ohio, couple was urged to consider abortion. They scheduled the procedure, but changed their minds the night before the pregnancy was scheduled to be terminated. Sierra said:
“The night before the procedure, I told Dustin I couldn’t do it. He had a big sigh of relief. He was very happy.”
Bentley arrived on October 31, 2015. Rather than the usual procedure – cleaning the newborn off, cutting his umbilical cord, and suctioning his mouth – he was placed directly into his parents’ arms, as doctors believed their time with their son was limited.
Sierra told The Washington Post:
“We were excited to meet him, even if it was only for an hour. We were just relieved he made it that far and we would get to meet him, living and breathing.”
The little guy survived more than an hour. In fact, 7 months later, he is home with his family after undergoing a groundbreaking surgery to put his brain in his skull.
Alan Cohen, head of pediatric neurosurgery at Johns Hopkins Hospital, said the herniated sac may contain brain, brain membranes and brain fluid. When the sac is filled with nonfunctional brain tissue, he said, a surgeon typically removes it. But when it contains vital brain structures, he said, the surgeon must find a way to put the brain back into the skull.
Bentley’s team at Boston Children’s drained the fluid, expanded the infant’s skull, and replaced the brain tissue that Bentley was found to be using.
Proctor said:
“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. It really presented a unique challenge.”
Source: Cosmopolitan – An x-ray of Bentley’s skull before surgery
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.
Sierra said:
“The more the shunt was working, the better he was starting to get. 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.”
Like most neurological conditions, experts say there is a spectrum of disability from mild to moderate, to severe, such as Bentley’s case. The child is not expected to develop normally like other children. For now, though, he requires no special care and will be followed by a neurologist near the family’s home in Ohio.
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.
Despite developmental delays, Bentley is expected to be able to enjoy the world around him.
Said Proctor:
“I am certainly optimistic that he could have a rewarding life.” [2]
Source: Cosmopolitan – Bentley today
Sources:
[1] Cosmopolitan
[2] Fox News
Cosmopolitan (images 1 and 2)