The story of Bentley and his miracle treatment started in early 2015 when Dustin and Sierra Yoder discovered they were expecting their second child. This joy turned to despair when the couple received the encephalocele diagnosis and were told by doctors that the “baby would be ‘incompatible with life,” said Sierra Yoder to STAT.
Immediately following the diagnosis, the Yoders had to make the difficult decision whether to continue the pregnancy or terminate it at that point. Because she was already more than 22 weeks along, this decision had to be made immediately. After briefly considering an abortion, the pair decided to deliver the baby and care for him until he passed. “The night before the procedure, I told Dustin I couldn’t do it,” Yoder said to the Washington Post.
Months later, Yoder went into labor, and the couple traveled to the hospital with just a small bag of essentials to care for Sierra during her labor and delivery, and a little outfit for the baby to wear during his first and final hours of life. After he was born, the baby, named Bentley Ross Yoder, was rushed to his parents so they could hold and comfort him. Instead of passing quietly as expected, Bentley was thriving. “But he was crying, and he was breathing, and he was moving,” said Sierra Yoder to the Washington Post. “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.”
Defying all odds, Bentley was able to return home with his parents after three days in the hospital. While at home, he endured several health issues, including two lung infections that required treatment with a breathing machine. Despite these setbacks, he continued to grow and thrive. The couple sought the advice of neurosurgeons who confirmed baby Bentley was using his brain, including the part that protruded outside his skull. Unfortunately, the doctors did not know how to move Bentley’s brain tissue, which extended several inches outside his head, back into the safety of his skull. Not satisfied with the prognosis, the Yoders traveled from their home in Ohio to Boston to seek treatment from the doctors at Boston’s Children’s Hospital.
Neurosurgeon-in-chief Mark Proctor and plastic surgeon John Meara took on Bentley’s case and worked together to formulate a treatment plan. In most cases, doctors remove the portion of the brain that is outside the skull and then close the cranium to protect the remaining brain tissue. Bentley’s case was unusual because he was using all of his brain tissue. Doctors could not remove his brain, so they decided instead to expand his skull and allow the brain to slide back into his cranium.
To prepare for this challenging surgery, the surgeons created several 3D-printed models of Bentley’s skull. These models allowed the surgeons to plan the operation and practice it several times before entering the operating room. With a plan in hand, the doctors completed the surgery in just five hours. In the month following the surgery, Bentley has improved dramatically — “He is now able to hold up his head. He’s eating. He’s smiling. He’s jabbering,” said Sierra in a Washington Post interview.