According to his parents, he’s now seven months old and alert after doctors at Boston Children’s Hospital devised a way to re-insert his brain into his cranium in what’s been dubbed the granddaddy of all cases. It was a life-saving treatment. Boston Children’s Hospital neurosurgeon and chief Mark Proctor told the Boston Globe, “However, it will not bring back a regular life.

Bentley’s Encephalicelli: A Rare Congenital Disease Resulting in Brain Herniation from Skull.

Bentley will, without a doubt, face difficulties.” Encephalicelli is a rare congenital disease in which a baby’s brain herniates from the skull while still in the womb, and the bones around it do not correctly grow. According to the National Organization of Rare Disorders, the region of the brain that rests outside the skull is normally covered by thin skin or membranes.

According to the Centers for Disease Control and Prevention, roughly 375 kids, or one out of every 10,000, are born in the United States each year with the deformity, which can cause mental and physical impairments, vision problems, seizures, and muscle weakness in the arms and legs. The reason behind this is unknown. Experts explain that, like most neurological diseases, there is a spectrum of severity ranging from low to moderate to severe cases like Bentley’s. The ruptured sac could contain brain membranes and brain fluid, according to Alan Cohen, head of pediatric neurosurgery at Johns Hopkins Hospital.

Couple Overcomes Rare Brain Condition in Unborn Baby During Surgery

A surgeon normally removes the sac when it’s full with non-functional brain matter, he said. However, if it contains essential brain structures, the surgeon must figure out a means to get the brain back into the skull. He said, “We didn’t think we had a chance.” Sierra and Dustin Yoder, both 25, grew up in Sugar Creek together. Sierra Yoder explained that their mothers had known one another since high school and had introduced them when they were two years old. They were married by the age of 21.

Beau, the couple’s first child, was born two months later. Sierra Yoder said her first pregnancy and delivery went smoothly, and their boy is doing well. They began planning for Bentley in December. “We didn’t care if it was a little boy or a little girl,” she explained. “All we wanted to do was make sure Beau had a sibling.” They were expecting a child the next month. Sierra Yoder stated that things appeared to be the same the second time around. The baby began to kick and kick and kick.

Couple Receives Terrifying News About Baby’s Skull During Ultrasound Scan.

Her and her husband squabbled about the ideal baby names. Sierra Yoder said she and her husband went to the doctor at 22 weeks to find out the gender of the baby. Her doctor squirted goo onto her stomach for an ultrasound and peered inside. Then she claimed he got solemn, and they were terrified. Something looked to be wrong with the baby’s skull, according to Yoder. Perhaps he’d misplaced his crown, perhaps even more. It wasn’t obvious. She and her husband were taken to the hospital for more examinations. She explained, “I started crying right away,” she added. “I wasn’t sure he’d make it.

Couple Contemplates Abortion After Learning Baby’s Life Will Be Incompatible with Life

The doctors didn’t know either.” Bentley’s congenital abnormality was disclosed to the Yoders by neurosurgeons at a Canton Hospital who warned them their baby had a low chance of survival. “If he makes it,” the doctors told Sierra Yoder, “he will not be compatible with life.” Because she was far along in her pregnancy, physicians advised the couple to contemplate abortion and to do it immediately. READ FULL STORY HERE>>>CLICK HERE TO CONTINUE READING>>>

“That was the saddest aspect of it all,” she admitted. “That day we decided to call it a day. We didn’t want him to be born into a world where he would suffer.” They chose June 26, 2015, as the date. However, the couple began to second-guess their decision, unsure if they should abort or birth him and keep him until he died. “I told Dustin the night before the procedure that I couldn’t do it,” Yoda recalled. He breathed a sigh of relief. He was overjoyed. Doctors offered them pamphlets for local funeral houses, as well as information on burials and cremations.

Couple Delivers and Cherishes Baby Boy Despite Knowing Time Together Will Be Brief

According to Yoder, she wanted him cremated but that she couldn’t imagine his death before his birth. Bentley Ross Yoder was chosen by the couple. They began to reflect on his firsts, the first time she met him, the first time she held him, and hoped that they wouldn’t be her lasts. They were barely minutes away from the delivery now. Sierra Yoder had been in labor since 8 pm on Halloween night.

She described the hospital room as being full with emotion, not grief, but joy about the baby boy they were about to meet, regardless of how brief their time together might be. She began to push in the ninth hour. Bentley was born 15 minutes later. She said, “We were all emotional. We’d been anticipating it for a long time.” Bentley’s umbilical cord was severed by Dustin Yoder. He was wrapped in a blanket by the nurses. There was no one to clean him, measure him, or suck the birth fluids from his neck. Bentley needed to be in his parents’ arms as soon as possible.

Family Spends Precious Moments with Baby Born with Life-Threatening Condition.

Every moment spent with him by his family was priceless. Each one could have been the last, for all the Yoders knew. Sierra Yoda remarked, “He was perfect. It didn’t matter how much time we had. We were simply grateful to be able to hold him. However, he was crying, breathing, and moving,” she continued. “Everyone was staring at him. We were all waiting for something to happen throughout the first four or five hours of his life, but it didn’t.”

Bentley had not been put down 36 hours later, according to Sierra Yoder, and family members had been passing him around. “We turned to the nurse and asked, ‘What do we do now?’” she explained. The family was urged by the doctors to take Bentley home and arrange for hospice care. That’s exactly what they did. Bentley’s health was an issue for him. He was admitted to the hospital with a respiratory virus, as well as strep and staph infections in his lungs.

Baby defies odds by breathing on his own after brain surgery

He was put on a breathing machine at one point, and doctors were concerned that once it was withdrawn, he’d be unable to breathe on his own. He did, however. He was awake, says the narrator. He was staring right at us. Bentley saw a specialist at Nationwide Children’s Hospital in Columbus when he was about four weeks old, according to Sierra Yoder.A neurosurgeon warned her after analyzing Bentley’s MRI that his brain was severely damaged both inside and outside his skull and that he would not live.

“So at that moment, we had no confidence.” He was sent to the Cleveland Clinic at the age of four months when a surgeon told his parents that he appeared to be using his brain, but that surgeon didn’t know if he could securely reinsert it into his cranium. The family headed to Boston Children’s Hospital at that point. Bentley was introduced to the surgical team by Dustin and Sierra, who sees a few severe encephalicelli cases each year.

Doctors devise a surgical plan for baby with brain protrusion using 3D printed models.

Proctor, the neurosurgeon, and John Mira, the top plastic surgeon at Boston Children’s Hospital, devised a surgical plan. At the time, the kid was five months old and had a pouch extending from his skull that included a major piece of his brain, a part that regulates motor function and problem-solving, as well as the part that controls vision. Bentley’s bulk, which was now buried beneath a blanket of golden locks, couldn’t be removed.

Unlike many encephalocele instances, he was using it. His surgical team at Boston Children’s employed 3D-printed models to prepare and practice their techniques. Bentley’s brain was 100 cubic centimeters outside his skull, so the surgeons had to extend his cranium to accommodate it. They devised a strategy to cut numerous vertical cuts into Bentley’s cranium and allow it to fall open to make extra space. He said that special dissolving plates would then hold the region open, allowing Bentley’s brain to return to his cranium. The team got to work on May 24th.

Neurosurgeons successfully replace baby’s brain after removing skull section.

His curls were shaved, and the skin and membranes that covered his brain were ripped away, according to the neurosurgeon. The section outside of his skull, including a smaller bit of the right front lobe and greater chunk of the right occipital lobe, Bentley’s brain was drained of cerebrospinal fluid by specialists. The team then cut the cranium and slipped the brain back into his head.