Sierra and Dustin Yoder somberly drove to the hospital on Halloween. Sierra was about to give birth to a baby the doctors predicted would shortly die.
The parents hoped for at least an hour with their little son before he died, but a miracle gave them much more than that.
When their first child, Beau, was a toddler, Sierra and Dustin decided to have another child. The pregnancy was normal, at least that’s what the Yoder’s thought.
Sierra went to the doctor to find out her baby’s gender. Instead, she received some devastating news. Her baby’s skull hadn’t formed properly, allowing part of the brain to form outside of the skull. This is called an encephalocele.
“They said he had zero chance of survival – ‘incompatible with life,’ they told us,” said Sierra. “I specifically remember asking is there any chance he could survive? They said no, that in the best-case scenario, he’s going to be a vegetable. They made it out like I was going to lose him at any point.”
Doctors recommended an abortion
“That was the darkest part of the entire thing,” Sierra told The Washington Post. “We decided to abort that day. We didn’t want him to come into the world and suffer.”
They made an appointment for the abortion, but Sierra changed her mind the night before.
“My maternal instinct since his diagnosis had been telling me they were wrong about him,” Sierra said. She decided to carry their son full term and named him Bentley Ross Yoder.
That’s when the funeral home pamphlets came
Doctors knew Bentley wasn’t going to live for very long.
“We were never given hope,” said Sierra.
They were told that their son wouldn’t talk, move or even recognize hunger. The family prepared for the worst.
On Halloween evening, they drove to the hospital to deliver and prepare to bury their son.
Bentley was born on Nov. 1, 2015
He was immediately placed in his parents arms. The doctors and nurses wanted these parents to hold their son while they could.
“He was perfect,” Sierra said. “It really didn’t matter how long we had. We were just thankful we got to hold him.”
To everyone’s surprise their son was crying, breathing and moving. Five hours later there was no sign of his health declining. Eventually, Sierra and Dustin were sent home with Bentley and hospice care – a service they miraculously never needed.
The family kept friends updated on Bentley’s condition on a Facebook support group called, #prayersforBentley.
The ultrasounds hadn’t lied. Part of Bentley’s brain formed outside of his skull. The growth was referred to as a cyst. In most cases, brain function in a cyst is rare since the brain tissue inside is usually dead.
The plan was to remove the cyst when Bentley was four to six months old, but Sierra and Dustin wanted a second opinion.
“From the beginning, we didn’t understand how he wasn’t using the brain. We always felt that maybe he was using what was left up in there,” said Sierra.
The second doctor offered a very different perspective. The first doctor implied that the surgery was not a big deal, because the brain in the cyst was non-functioning. The second doctor said Bentley could die from a surgery and she believed the brain was functioning.
The second doctor knew some surgeons at Boston Children’s Hospital.
Finally given hope, Sierra and Dustin decided to go with the recommendation of the second doctor.
Boston Children’s Hospital
Bentley’s unique condition inspired a four part documentary detailing his journey.
The doctors used a 3D printer to make a replica of Bentley’s skull and cyst.
After examining the 3D printing of Bentley’s head, the doctors went to talk to Sierra and Dustin.
“They said they are going to have to widen the skull and basically rearrange the bone so the brain will fit back in,” Sierra wrote on Facebook. “There is maybe 20% of brain outside his head that they [are] going to put back in.”
The doctors practiced their cuts on the 3D model before Bentley’s surgery.
On May 24, Bentley was carried into the surgical room. The surgery was scheduled for 7:30 a.m. Family anxiously waited, knowing the operation was dangerous and the first of its kind.
Five hours later, the surgeons visited the family.
“When we saw them, our hearts dropped,” Sierra said. They were told the surgery would last much longer. The doctors sat down.
“Okay, he seems to be doing really great,” said Dr. Mark Proctor, the interim neurosurgeon-in-chief. Sierra started to smile with relief. The doctors brought in the models to show Sierra and Dustin exactly what they did.
The surgery lasted three hours and the doctors accomplished everything they wanted to and more. Bentley’s brain was finally protected in his skull.
Bentley was on the road to recovery, but a shunt was placed to drain the fluid buildup in his brain.
Two weeks after his surgery, Bentley was ready to go home
His movements were more purposeful, and he seemed to be more aware.
Sierra and Dustin painstakingly thought they would only get to hold their son for a few hours at most. Now, almost two years later, they are still holding and loving their son.
“It’s like winning the lottery…it’s better than that, it’s life. You get to continue life and hold life and have life,” said Dustin.
Since his surgery, Bentley has occasional respiratory problems, but overall he is doing amazing. As Sierra said, “He’s our little miracle.”
Sign up here for our weekly FamilyShare email and get more of the stories you love.