Thursday, June 23, 2016

Saving Bentley's brain

Everyone was so sure the newborn would die that they didn’t even clean him off after birth. Nurses didn’t weigh him, or suction fluid out of his throat.

His parents had bought no baby supplies, other than a single onesie. They expected to bury him in it.

But Bentley Yoder came out screaming and wouldn’t give up…

A significant chunk of his brain grew outside his skull, in a bulbous mass at the top of his head. With birth defects like his, the protruding white matter is usually such a mess that doctors just lop it off. But Bentley had so much brain outside his skull that doctors thought it must be crucial to his survival….

Operating was also a tremendous risk. The brain material was too big to fit back in his skull. And Bentley’s situation was so unusual, doctors couldn’t predict what would happen once they shaved off his luxurious light brown curls and cut into the mass…

Their first son, Beau, was healthy.  But at the 22-week mark of her second pregnancy, her boss noticed something amiss in Sierra’s ultrasound.

Two days later, after a higher-resolution scan, Sierra and Dustin were told that their unborn child had a rare and often fatal birth defect called an encephalocele, in which the skull doesn’t form properly…

Because Sierra was already more than mid-way through the pregnancy, specialists told the couple they essentially had one day to decide whether to get an abortion. At first, the prognosis was so overwhelming and hopeless, they said yes.

That night, Dustin turned on his favorite techno music to try to relax. Sierra felt the fetus kicking and turning inside of her, as if responding to the beat. He felt so alive. How could he be incompatible with life?

Sierra went into labor on Halloween, wearing a shirt she’d decorated with a pumpkin drawn over her big belly. Although she and Dustin had been told their son wouldn’t live more than a few hours, they were excited to finally meet him. They hoped to hold him before he passed….

By this point an Internet expert on encephaloceles, Sierra tracked down Dr. John Meara at Boston Children’s Hospital. He has performed more such surgeries than anyone else in North America.

He agreed there was a chance to save Bentley’s life.

Meara developed a plan to slice Bentley’s skull in several places and spread it out like a flower to make more room. To close the encephalocele, he planned to take two segments of skull from elsewhere and criss-cross them at the top of the baby’s head.

To test his idea, the surgeon sent Bentley’s brain scans to a 3-D printer at Boston Children’s and turned the resulting plastic model over and over in his hands. He sliced it up, and sent it back to the lab to get a sense of how much more material he could fit inside Bentley’s skull.

In consultation with neurosurgeon Dr. Mark Proctor, Meara decided it might be just enough to fit all of Bentley’s brain…

(Above image from:

Proctor said they could have operated on Bentley without a 3-D printout of the boy’s skull, but holding the model in their hands gave the surgeons a much better idea of what they would have to deal with in the operating room. Without that kind of prep, the surgery might have taken 14 hours, the doctors said. Now, they hoped to complete it in four or five…

Once again, Bentley defied the odds. The May 24 surgery went well, though he needed two follow-up procedures to add a shunt, draining excess fluid from his brain…

No one knows how much of Bentley’s brain is functional, how “normal” he may eventually become…

“Nobody has any idea of what this kid is actually going to be able to do, because he’s so different,” Sierra said. “Even the fact that he’s meeting some of his milestones is a blessing, so we’re just taking it one day at a time.”

Throughout the emotional roller-coaster of the last year, Dustin said he has found an inner peace: “I’m not really afraid of anything anymore.” 


  1. When he was four weeks old, Bentley saw a specialist at Nationwide Children’s Hospital in Columbus, Ohio. The doctor told the Yoders that Bentley’s brain was too damaged and he would not live. He advised removing the portion of his brain that was outside the skull, saying that Bentley wasn’t using it. This didn’t feel right to the Yoders, who didn’t agree that he wasn’t using this part of his brain.

    Three months later, Bentley’s parents took him to Cleveland Clinic where they were told that Bentley seemed to be using the exterior part of his brain, but doctors weren’t confident it could be put back inside his skull.

    However, the Yoders refused to give up, and finally went to Boston Children’s Hospital to meet the surgical team that cares for a few children with an encephalocele each year. Now five months old, Bentley had a pouch of skin at the top of his head which held important parts of his brain used for motor function, problem-solving, and eyesight. Doctors agreed with the Yoders that Bentley was likely using that portion of his brain, and they decided it had to be placed inside his skull.

    “Dr. [John] Meara really was the first one that gave us a lot of hope and actually got us thinking that we might actually be able to pull this off,” said Sierra Yoder.

    Dr. Meara said that the difficult part about Bentley’s surgery was that a good portion of his brain was outside the skull, so the skull would need to be reconstructed. A 3D model of his skull was created and worked on several times as practice for the surgery that was scheduled for May 24.

    Doctors cut back the skin and the membranes that were covering Bentley’s brain and drained excess fluid. Cuts they made in the skull allowed them to gently place the brain inside. The pieces of skull they had cut out were then put back on to close the gap.

    The surgery was successful, and after just five hours, Bentley was in recovery.

    It’s been a month since the surgery and Bentley is doing well. He’s eating and smiling, and his mother says he looks just like his big brother.

    While his future is uncertain, it is a miracle that he is alive and that the right doctors were located and able to help him. For these miracles, his parents are grateful.

    “We’ve been through so much from the beginning – being told he’s not gonna make it,” said Sierra Yoder. “And him always proving everybody wrong.”

  2. Bentley's Second Chance | Boston Children's Hospital

    Saving Bentley’s brain: Daring surgery aims to fix a gaping hole in baby’s skull

  3. During a 20-week ultrasound, doctors told Bentley Yoder’s parents that their son was “incompatible with life,” and that he had a 0 percent chance of survival. Devastated, the Ohio parents considered terminating the pregnancy, but ultimately they decided to carry Bently to term.

    “All the way through, I just kept having the feeling that it’s going to be OK, it’s going to be all right,” Dustin Yoder, Bentley’s father, said in a post on Thriving, a Boston Children’s Hospital blog.

    In the ultrasound, doctors had detected that brain tissue was bulging out of an opening in Bentley’s skull and diagnosed him with encephalocele. The condition is a rare neural tube defect that occurs when the tube does not close completely during pregnancy. According to the Centers for Disease Control and Prevention (CDC), the condition occurs in one out of 10,000 babies born in the United States each year.

    “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,” Sierra Yoder, Bentley’s mother, said in the blog post. “They made it out like I was going to lose him at any point.”

    The Yoders entered the birth excited for the limited time they were expected to have with their son and picked out an outfit to bury him in, but Bentley had other plans. The staff sent the family home with hospice but Bentley was feeding from the bottle, cooing and crying like any other child.

    “I couldn’t make him out any different from my other son,” Sierra said, according to the blog post. “He was just a normal baby with something on the top of his head.”...

    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.

    “The more the shunt was working, the better he was starting to get,” Sierra said in the blog post. “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.”

    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.

    “I am certainly optimistic that he could have a rewarding life,” Proctor said in the blog post.