During an ultrasound checkup when Sierra and Dustin Yoder were 20 weeks pregnant, the couple received news that is every parent’s worst nightmare:
Doctors informed them that their son would be “incompatible with life,” and that he had a zero percent chance of survival. They said that the baby would be born with encephalocele, a condition where a sac-like protrusion of the brain, covered by thin membranes, sits outside the skull.
In layman’s terms, their child would be born with his brain outside his skull.
After initially hearing the news, naturally, Sierra said they were devastated, telling People:
“We were unimaginably shocked when we got the dire prognosis. The specialist gave us no hope that he would ever live, breathe or thrive. It was gut-wrenching and nerve-wracking to think I was going to have our baby, just to say goodbye as soon as we got to say hello.”
Doctors suggested they abort their child, explaining that on the small chance he did survive, the baby would be a “vegetable with no feeling, no pain, no emotions.”
However, the night before the procedure, the parents backed out.
Sierra explained why they decided not to follow through with the abortion:
“My maternal instinct since his diagnosis had been telling me they were wrong about him.”
Then, on October 8, 2015, around 8pm, Sierra went into labor. Nine hours later, little Bentley was born.
His brain was outside his skull, just as doctors predicted:
Despite beating all the odds, the Yoder family was given unimaginable news yet again, when doctors said Bentley would only have a few months to live:
Sierra and Dustin stayed awake for the next 36 hours, watching over their newborn miracle.
In an effort to help Bentley, Sierra and Dustin took their child to Boston Children’s Hospital, where doctors spent the next months analyzing Bentley’s complex case.
To their surprise, doctors found that even though Bentley’s brain was protruding, there was lots of functional brain tissue.
That’s when doctors came to Sierra and Dustin, proposing that they perform a surgery on Bentley to remove the bulge, preserving as much functional brain tissue as possible.
After being told the protrusion would only get bigger and bigger, and eventually erupt, the Yoders decided to go through with the surgery.
Bentley’s case was very unusual, Dr. Proctor told People:
“Many encephalocele cases, you essentially just amputate the part of the brain that’s outside [of the head] because it’s not functional. But in his case, we made a great effort to preserve it all.”
After a high-risk surgery, the Yoder family yet again heard unimaginable news.
But this time, it was good news:
Bentley had miraculously survived the surgery, and doctors were able to transfer 90 percent of his brain tissue.
Bentley’s bulge had been fixed:
Dr. John Meara, Boston Children’s plastic surgeon-in-chief commented on Bentley’s case:
“We are so positive. He bounced back very quickly and he returned back to his baseline, neurologically, very quickly. Several days after [surgery], he was back to where he was beforehand.”
“I have no reason to believe that [his brain] won’t grow normally.”
After the surgery was completed, Sierra said:
“We were terrified of surgery, but we knew it was his only option because otherwise, it was just a ticking time bomb. “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 and if there is ever a day when we feel he can’t or has no will to continue, then we will accept that. But that’s not the case.”
Bentley is on his way to a healthy recovery, and despite every obstacle, this little fighter is recovering on schedule.