The Ultrasound Said He Would Not Live. He Came Out Crying.

At 22 weeks, in Ohio, a scan stopped Sierra and Dustin Yoder’s second pregnancy in its tracks.

Part of their son’s brain was growing outside his skull — an encephalocele. Specialists described a future without speech or movement, if he lived at all. Termination was put on the table. The couple chose to continue, planning love and palliative care for as long as they had him.

Bentley Ross Yoder was born on November 1, 2015, crying. He breathed on his own. He survived the first dangerous weeks without seizures. The occipital mass, however, kept filling with fluid. The skin over it thinned. Ohio surgeons considered cutting the sac away, assuming the tissue inside was damaged and unused. His parents did not believe that. Bentley’s development suggested he was using what sat outside the bone.

They reached Boston Children’s Hospital. Neurosurgeon Dr. Mark Proctor and plastic surgeon Dr. John Meara agreed the mass held working brain — including tissue tied to vision, motor control, and problem-solving. Amputation was off the table. The brain had to go back in.

That required a larger skull.

The hospital’s simulation program printed exact 3-D replicas of Bentley’s cranium, brain, and dura. Surgeons rehearsed on plastic before they touched the child. They drained excess cerebrospinal fluid, made decompressive cuts so the bone could open like a flower, and eased the living tissue inward. Dissolving plates held the expanded vault. Surgery took place on May 24, 2016, when Bentley was nearly seven months old — late enough for the bone to be sturdy, early enough that the sac had not ruptured.

He came through it. Follow-up operations added a shunt to manage fluid. He kept vision in both eyes. At seven months he was smiling and babbling like other infants his age. No one could promise what his mind would do years later. What they could say, in the weeks after the rehearsal on a printed skull became an operation on a living one, was simpler: the boy who was not supposed to speak or move was still here, and looking back.

Sources

STAT News, “Daring brain surgery gives baby with a birth defect a chance,” June 15, 2016. https://www.statnews.com/2016/06/15/birth-defect-baby-boston-childrens-hospital/
Boston Children’s Hospital / Vector, “Printing your skull: How 3D printing helps surgeons plan complex encephalocele brain surgeries,” 2016
Ganske et al., Plastic and Reconstructive Surgery — Global Open (2018), case report on simulation-planned encephalocele repair at Boston Children’s Hospital