The survival story of baby born with his brain outside his skull
Encephalocele is a rare congenital condition in which a baby’s brain herniates and the bones do not properly form around it
Theirs is a classic story of childhood sweethearts growing up together and falling in love with each other. Their mothers had been friends since high school, and at two-years-old, Dustin and Sierra Yoder from Sugarcreek were first introduced.
By the time they were 21, they were married. Two months later, the newlyweds welcomed their first child, Beau.
Their story stopped having the conventional narrative when the couple started planning for their second child.
At first everything seemed going the way they should—until they went in to find out the sex of their child, and discovered instead that something was wrong with the baby’s head.
The unborn child was missing his crown—maybe more. The doctors were uncertain.
“I started bawling immediately,” Sierra said in a Washington Post story. “I didn’t think he would make it.”
Neurosurgeons told the couple that the baby had a rare congenital condition called encephalocele in which a baby’s brain herniates from the skull in the womb and the bones do not properly form around it.
According to National Organization of Rare Disorders, the portion of the brain that sits outside the skull is usually covered by thin skin or membranes.
The Yoders’ baby had a slim shot at survival, the doctors said. “If he makes it, he will not be compatible with life,” they said.
The doctors even suggested that Sierra undergo an abortion and had to decide quickly since she was already too far into her pregnancy.
“That was the darkest part of the entire thing,” she said. “We decided to abort that day. We didn’t want him to come into the world and suffer.”
As the day of the scheduled abortion drew nearer, however, the couple started having second thoughts.
“The night before the procedure, I told Dustin I couldn’t do it,” Sierra said. “He had a big sigh of relief. He was very happy.”
The couple then began arranging their unborn baby’s funeral, their unborn baby who they had named Bentley Ross Yoder.
Sierra described her labor “emotional.” It didn’t matter that they would only get to meet him for a short time; the couple were excited.
Next page, find out what happened to baby Bentley
“He was crying and he was breathing and he was moving,” she said. “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.”
Even thirty six hours later, after Bentley was passed around the room for family members to meet him, he defied the odds.
When it became clear that Bentley would live, the couple asked: “what do we do now?” Doctors suggested that the family take Bentley home and arrange hospice care.
“At about 4 months, he was taken to the Cleveland Clinic, where a surgeon told his parents that he appeared to be using his brain, but the surgeon did not know whether it could be safely put back into his cranium,” said the Washington Post report.
Then the family went to Boston Children’s Hospital to meet the surgical team, which sees a few severe encephalocele cases each year. The doctors there formed a surgical strategy.
“On May 24, the team went to work,” the report said. “They shaved his curls and cut back the skin and membranes covering his brain. The portion outside his skull included a smaller part of the right frontal lobe and a larger part of the right occipital lobe.”
The surgeons drained cerebrospinal fluid from Bentley’s brain, then made the cuts in his cranium and eased the brain back into his head. Then they took leftover bone from the cuts and crisscrossed them over the top of the head to close the gap.
Five hours later, Bentley was recovering, and his family went in to see him.
“He was awake; he was looking at us,” Sierra said. “He wasn’t cranky. He was just lying there, taking it all in.”
A month after his surgery, Bentley can now hold his head up. He’s now also eating and smiling.
“His hair is growing back in,” Sierra Yoder said. “He looks like his brother now.”
His future remains uncertain, but the Yoders won’t stop hoping the best for their son.
“Because of how different his brain really is, they have no one to compare him to,” Sierra Yoder said, adding that the doctors think “he will have a rewarding life. We just have to take it step by step.”
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