At five months gestation, Sierra Yoder went to the doctor for a routine ultrasound to find out how her baby was growing and whether she was having her second little boy or her first little girl. She was told her baby was a boy, but she also learned that her son had an encephalocele, which meant part of his brain was growing outside of his skull. Doctors advised Yoder and her husband Dustin to abort the baby.
Believing there was zero chance their son would survive, the parents decided to abort. But then as the appointment approached, Sierra Yoder changed her mind.
“The night before the procedure, I told Dustin I couldn’t do it,” Sierra Yoder told The Washington Post. “He had a big sigh of relief. He was very happy.”
Doctors continued to tell the couple that their son would die at birth and he may not even take a single breath. They said he would be “a shell.” But Sierra Yoder decided her son wasn’t going to have the outcome that the doctors said he would.
They headed for the hospital to deliver the baby they had named Bentley, but without any car seat or plan to bring him home. They were excited to meet their son even if it was only to say goodbye. Then, to their delight and surprise, Bentley was born kicking and screaming.
“He was perfect,” Sierra Yoder said. “It really didn’t matter how long we had. We were just thankful we got to hold him.”
Unsure how many minutes or hours they had with him, the couple and their family members took turns holding him for thirty-six hours. Doctors finally told them they could take Bentley home.
So they did, armed with information on hospice care and funerals. But even with his struggles, including a respiratory infection that led to a hospitalization and breathing machine, Bentley continued to live and grow.
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.”
His mother is looking forward to watching Bentley reach physical milestones that they were told he would never meet.
“He is different but we’re gonna try to make it as undifferent as possible,” said Sierra Yoder. “We’re gonna try to make sure that he has a normal life. […] I think he’s gonna put the rest of us to shame.”
You can see more of Bentley’s story at Boston Children’s Hospital’s Bentley’s Second Chance.