Health
Baby Born With 'Incompatible With Life' Condition Alive and Thriving
ABC News Wed, Jun 9:13 AM PDT
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It's been a
month since 7-month-old Bentley Yoder underwent surgery to place his
brain back into his cranium – and the strong baby who is currently in
recovery has a future that is "as bright as his eyes," according to his
parents, Sierra and Dustin Yoder.
Bentley was born with a rare congenital disorder called encephalocele, in which a sac-like protrusion of the brain, covered by thin membranes, sits outside the skull. Doctors originally told Sierra and Dustin, who live in Sugarcreek, Ohio, that their son would not survive long after he was born.
"We were unimaginably shocked when we got the dire prognosis," Sierra tells PEOPLE. "The specialist gave us no hope that he would ever live, breathe or thrive. It was gut-wrenching and nerve-wracking to think I was going to have our baby, just to say goodbye as soon as we got to say hello." She adds, "But he's already proved he's meant for big things. He continues to give the medical field a run for their money." Sierra and Dustin, both 25, were "heartbroken and confused" when doctors first told them about the condition during an ultrasound to reveal their baby's gender. "The doctor's face grew pale and I could tell something was wrong," explains Sierra. "They said it was a miracle he survived in-utero for 22 weeks." They didn't expect their baby to live for more than a few hours after birth – and if he did, doctors predicted he would have little to no brain function. "If by some chance he did survive, they said he would be a vegetable," says the mother. "A vegetable with no feeling, no pain, no emotions…"
The couple, also parents to 3-year-old Beau, were told to consider abortion as an option after learning of his rare encephalocele condition, which has no known cause and can often lead to death. "We decided we didn't want him to suffer in a vegetable state so we chose to abort," says Sierra. "The chances of him being okay were the same chances as winning the lottery, is how [doctors] explained it." But the night before the scheduled abortion, Sierra and Dustin couldn't go through with it. "My maternal instinct since his diagnosis had been telling me they were wrong about him," says Sierra. "I'm 100 percent glad we [didn't go through with the abortion]. Bentley is an amazing little fighter."
Sierra went into labor around 8 p.m. on October 31, 2015, and Bentley was born nine hours later. "It was love at first sight. He came out kicking and screaming and breathing – we were so relieved we got even that because it was not what doctors had anticipated," says Sierra. The parents stayed awake for 36 hours straight after Bentley was born because they were "afraid he was going to take a turn downhill." "We lived that way until he was 4-weeks-old," says Sierra.
Parents Who Refused to Abort Baby with Brain Outside Skull Open up About Son's Transformative Surgery: 'You Can Feel His Will to Live'
People 14 hours agoBentley was born with a rare congenital disorder called encephalocele, in which a sac-like protrusion of the brain, covered by thin membranes, sits outside the skull. Doctors originally told Sierra and Dustin, who live in Sugarcreek, Ohio, that their son would not survive long after he was born.
"We were unimaginably shocked when we got the dire prognosis," Sierra tells PEOPLE. "The specialist gave us no hope that he would ever live, breathe or thrive. It was gut-wrenching and nerve-wracking to think I was going to have our baby, just to say goodbye as soon as we got to say hello." She adds, "But he's already proved he's meant for big things. He continues to give the medical field a run for their money." Sierra and Dustin, both 25, were "heartbroken and confused" when doctors first told them about the condition during an ultrasound to reveal their baby's gender. "The doctor's face grew pale and I could tell something was wrong," explains Sierra. "They said it was a miracle he survived in-utero for 22 weeks." They didn't expect their baby to live for more than a few hours after birth – and if he did, doctors predicted he would have little to no brain function. "If by some chance he did survive, they said he would be a vegetable," says the mother. "A vegetable with no feeling, no pain, no emotions…"
The couple, also parents to 3-year-old Beau, were told to consider abortion as an option after learning of his rare encephalocele condition, which has no known cause and can often lead to death. "We decided we didn't want him to suffer in a vegetable state so we chose to abort," says Sierra. "The chances of him being okay were the same chances as winning the lottery, is how [doctors] explained it." But the night before the scheduled abortion, Sierra and Dustin couldn't go through with it. "My maternal instinct since his diagnosis had been telling me they were wrong about him," says Sierra. "I'm 100 percent glad we [didn't go through with the abortion]. Bentley is an amazing little fighter."
Sierra went into labor around 8 p.m. on October 31, 2015, and Bentley was born nine hours later. "It was love at first sight. He came out kicking and screaming and breathing – we were so relieved we got even that because it was not what doctors had anticipated," says Sierra. The parents stayed awake for 36 hours straight after Bentley was born because they were "afraid he was going to take a turn downhill." "We lived that way until he was 4-weeks-old," says Sierra.
Kelly Hodgkins,Digital Trends 13 hours ago
Expecting parents Dustin and Sierra Yoder were handed
dreadful news during a routine prenatal ultrasound. The pair were told
their baby boy had encephalocele, a rare birth defect that causes the
brain to grow outside the brain cavity due to a hole in the skull.
Normally a fatal condition, this story has a happy outcome thanks to a
pair of surgeons who used 3D printing to devise a successful treatment,
reports STAT.The story of Bentley and his miracle treatment started in early 2015 when Dustin and Sierra Yoder discovered they were expecting their second child. This joy turned to despair when the couple received the encephalocele diagnosis and were told by doctors that the “baby would be ‘incompatible with life,” said Sierra Yoder to STAT.
Immediately following the diagnosis, the Yoders had to make the difficult decision whether to continue the pregnancy or terminate it at that point. Because she was already more than 22 weeks along, this decision had to be made immediately. After briefly considering an abortion, the pair decided to deliver the baby and care for him until he passed. “The night before the procedure, I told Dustin I couldn’t do it,” Yoder said to the Washington Post.
Months later, Yoder went into labor, and the couple traveled to the hospital with just a small bag of essentials to care for Sierra during her labor and delivery, and a little outfit for the baby to wear during his first and final hours of life. After he was born, the baby, named Bentley Ross Yoder, was rushed to his parents so they could hold and comfort him. Instead of passing quietly as expected, Bentley was thriving. “But he was crying, and he was breathing, and he was moving,” said Sierra Yoder to the Washington Post. “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.”
Related: By 3D printing tumors, scientists hope to kill brain cancer
Defying all odds, Bentley was able to return home with his parents after three days in the hospital. While at home, he endured several health issues, including two lung infections that required treatment with a breathing machine. Despite these setbacks, he continued to grow and thrive. The couple sought the advice of neurosurgeons who confirmed baby Bentley was using his brain, including the part that protruded outside his skull. Unfortunately, the doctors did not know how to move Bentley’s brain tissue, which extended several inches outside his head, back into the safety of his skull. Not satisfied with the prognosis, the Yoders traveled from their home in Ohio to Boston to seek treatment from the doctors at Boston’s Children’s Hospital.
Neurosurgeon-in-chief Mark Proctor and
plastic surgeon John Meara took on Bentley’s case and worked together to
formulate a treatment plan. In most cases, doctors remove the portion
of the brain that is outside the skull and then close the cranium to
protect the remaining brain tissue. Bentley’s case was unusual because
he was using all of his brain tissue. Doctors could not remove his
brain, so they decided instead to expand his skull and allow the brain
to slide back into his cranium.
To prepare for this challenging surgery, the surgeons created several 3D-printed models of Bentley’s skull. These models allowed the surgeons to plan the operation and practice it several times before entering the operating room. With a plan in hand, the doctors completed the surgery in just five hours. In the month following the surgery, Bentley has improved dramatically — “He is now able to hold up his head. He’s eating. He’s smiling. He’s jabbering,” said Sierra in a Washington Post interview.
To prepare for this challenging surgery, the surgeons created several 3D-printed models of Bentley’s skull. These models allowed the surgeons to plan the operation and practice it several times before entering the operating room. With a plan in hand, the doctors completed the surgery in just five hours. In the month following the surgery, Bentley has improved dramatically — “He is now able to hold up his head. He’s eating. He’s smiling. He’s jabbering,” said Sierra in a Washington Post interview.
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