Dustin and Sierra Yoder were pregnant with their second son when, at 22 weeks along, doctors told them their unborn baby had a hole at the top of his skull. The rare birth defect, known as encephalocele, is typically fatal; their baby's brain was growing outside his skull and he was thus considered "incompatible with life," the Ohio couple recalls to Stat.
They decided to continue the pregnancy and prepared themselves for a baby who wouldn't live more than a few hours. After Bentley was born, nurses didn't weigh him, suction his throat, or clean him off. But the infant fought, and though he had a few scares and infections during his first few months of life, he kept fighting. Then, last month when he was 7 months old, he underwent surgery to put his brain inside his skull.
The Yoders found Dr. John Meara at Boston Children's Hospital, who came up with a plan: He would slice Bentley's skull and then spread it out to make it bigger, then close the hole using criss-crossed segments from other parts of the baby's skull. He had Bentley's brain scans 3D-printed and practiced slicing the plastic model; he then sent it to the lab to find out how much more material would end up fitting inside the remodeled skull, and determined, with the help of a neurosurgeon, that all of Bentley's brain would likely fit.
The May 24 surgery and two follow-up procedures went well, and Bentley is starting physical therapy this month. Though it's not yet clear whether Bentley will have lingering issues (it's possible he'll have vision problems, and most babies with encephalocele have developmental delays), "even the fact that he’s meeting some of his milestones is a blessing," Sierra says. Read the full story here.