At 22 weeks in that Sierra Yoder’s second pregnancy took an unexpected turn.
“When we went in to do the gender reveal ultrasound I could tell something was wrong.” – According to Sierra,
Doctors in Ohio broke the news that the son she was carrying had an encephalocele — also known as cranium bifidum — a condition where parts of the brain protrude through openings in the skull creating sac-like growths. In short, the neural tubes hadn’t developed properly during fetal development, and parts of the baby’s brain were outside the skull.
She shared her reaction “I started bawling immediately … I didn’t think he would make it.”
A scan of Bentley’s skull.Source:Facebook
Sierra and her husband Dustin were told by doctors in Ohio that there was “no chance he was going to live. He won’t talk. He won’t move. He won’t know when he’s hungry. He’ll be a shell.”
And as a result, these parents spent more of Sierra’s pregnancy planning for their baby’s funeral rather than his birth.
Despite this, when it came time for Sierra to terminate the pregnancy, she simply couldn’t go through with it. Keeping him at least meant getting the chance to meet him before saying goodbye.
She carried her son to full term, and little Bentley Ross Yoder was born right on cue on 31 October, 2015.
According to the Post, they had only one outfit for him — “one onesie — light blue with stars — and matching pants and warm, fuzzy socks.” They also had every reason to expect that they would be burying him in it soon after.
So you can imagine their disbelief when Bentley came out kicking and screaming. He was passed among family and friends for the first five hours, with everyone expecting the next hour to be his last.
But he didn’t stop breathing, and the Yoders were told to take him home and arrange hospice care. “He was never looked at as a baby that was going to survive,” says Sierra.
Taking Bentley home.
They took him home, albeit still with only a meagre amount of hope. However, to their surprise — and with some complications like a staph infection on his lungs — he continued to thrive.
He continued to grow, moving normally and crying when he needed feeding. In fact, Sierra could see nothing different between Bentley and her older son Beau.
He was, she says, just a normal baby with “something on the top of his head”.
The first surgeon they saw made it seem like the procedure to help Bentley would be simple. They claimed the growth on his head was “just damaged tissue” and “there’s no way it could be functioning”.
Looking at how well their son moved and fed, Sierra and Dustin couldn’t believe that Bentley wasn’t using his brain. They decided to seek out a second opinion — which is how they ended up at Boston Children’s Hospital, a facility with a renowned Cleft and Craniofacial Centre.
Here they met Dr John Meara, the first person to tell them there was a good chance five-month-old Bentley was using the brain that was outside his skull, meaning it couldn’t simply ‘be removed’. He was also the first person to make them feel at ease with their situation.
A surgical strategy was formed. Surgeons practised the unique skills required to operate on Bentley using 3D models. And on 24 May 2016, the surgery began.
The five-hour procedure went faster than expected. It required fluid to be drained from Bentley’s head, before surgeons could gently move the brain back inside the head. Leftover bone was then used to close the gap and reform the skull.
Sierra told the Post that doctors aren’t sure what to expect next. “Because of how different his brain really is, they have no one to compare him to.”
he signs so far are looking good. He can hold his head up, he is making noises, and he looks like his big brother. But no milestone is assured.
For now the Yoders and their loved ones simply need to take each day as it comes. He’s defied the odds so far, which is reason enough to continue to hope for the best.