The New Prognosis

"We were excited to meet him, even if it was only for an [anticipated] hour. We were just relieved he made it that far [to birth] and we would get to meet him, living and breathing [before his death]."
"But he was crying and he was breathing and he was moving [after birth]. 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. We looked at the nurse and we said, 'What do we do now?'"
"Because of how different his brain really is, they [medical science] have no one to compare him to. [Doctors think] he will have a rewarding life. We just have to take it step by step." 
Sierra Yoder, Sugarcreek, Ohio, U.S.A.

  Bentley Yoder before surgery. (Katherine C. Cohen/Boston Children's Hospital)

Dustin and Sierra Yoder, living in a small Ohio town, were awaiting the birth of their second child. When she was 22 weeks into her pregnancy Sierra and her husband visited their doctor for an ultrasound. What they discovered would have disconcerted and frightened anyone. They were informed by medical professionals that an abortion might be their best option. After sober thought, they determined to proceed with the pregnancy.

It had been explained to them that their baby would be born with a rare congenital disorder called encephalocele where the brain of a baby, while in the womb, migrates outside the skull. A portion of the brain sits outside the skull, covered with a membrane. The herniated sac that results may contain brain, brain membranes and brain fluid. If the sac is filled with brain tissue absent function it is surgically removed.

If, however, the sac is found to contain vital brain structures, a whole other option presents itself; the operating surgeon must then decide how best to go about fitting the brain back into the skull. In the instance of the Yoders who had named their baby Bentley, doctors warned the Yoders that their son would most likely live only a brief period once he was born. If, on the other hand, he did not die, he would have no cognitive function.

Bentley, however is now seven months old. Surgeons at Boston Children's Hospital planned a strategy that would result in his brain being placed back into his cranium. "It was a life-saving procedure. But it will not restore a normal life", cautioned Mark Proctor, neurosurgeon-in-chief at Boston Children's Hospital.

When the baby was born, what doctors had warned his parents would occur, did not. He lived despite expectations, and several days after his birth the family was informed they could take the baby home with them and from there arrange hospice care for  him. When he was fuor weeks old they took Bentley to a specialist at Nationwide Children's Hospital in Columbus, Ohio. Reviewing his MRI, a neurosurgeon there held out no hope; that Bentley's brain was too damaged to allow him to survive.

Three months later his parents took him to the Cleveland Clinic and there a surgeon informed Sierra and Dustin that while their baby gave the appearance of using his brain, the surgeon was doubtful whether it could safely be placed back into his cranium. And it was at this point shortly afterward that the family visited Boston Children's Hospital where Dr. Proctor, the neurosurgeon, and the hospital's plastic surgeon in chief, John Meara, conceived their surgical protocol.

Sierra, Dustin, Beau and Bentley Yoder. (Courtesy of Sierra Yoder)

Bentley underwent surgery at five months, to have the pouch protruding from his skull holding part of his brain that controls motor functions, problem solving and vision, incorporated back into his skull. Bentley's blonde curls that grew atop the pouch holding his brain material was shaved away. Doctors drained cerebrospinal fluid from the brain, cut into his cranium to ease the brain back into his head, using leftover bone to criss-cross the top of his head, closing the gap.

It is now almost a month since that five-hour surgery. Bentley holds up his head, he is eating, he is smiling and he is making the usual baby sounds.