Stories about: encephalocele

A second chance for Bentley and his encephalocele

Bentley Yoder encephaloceleSierra Yoder was having a normal pregnancy, but the 20-week prenatal ultrasound seemed to tell another story. The Yoders learned that their child — a boy to be named Bentley — had something called an encephalocele. Brain tissue was bulging out of an abnormal opening in his skull, unprotected by bone.

“They said he had zero chance of survival — ‘incompatible with life,’ they told us,” recalls Sierra. “I specifically remember asking is there any chance he could survive? They said no, that in the best-case scenario, he’s going to be a vegetable. They made it out like I was going to lose him at any point.”

With that knowledge, the Yoders decided to end the pregnancy. But at the 11th hour, Sierra changed her mind. It didn’t feel right — Bentley was moving and kicking and had a strong heartbeat.

So they kept going.

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A fighting chance for Eva

Violet and Vincent with their new sister

Early in 2015, Jennifer and Vincent Ramirez had everything they wanted — two healthy children: Violet, 5, and Vincent, 3, and they had just bought a new home in Salt Lake City. The couple decided to try for a third child.

Jennifer learned she was pregnant in a few weeks.

“Everything was going according to plan,” recalls Vincent. In July of 2015, the entire family packed into an exam room for Jennifer’s five-month ultrasound.

“The doctor wasn’t talking much, and the ultrasound seemed to be taking longer than usual,” says Jennifer. After the ultrasound was done, the doctor asked the couple if they could put their children in another room while they discussed the results.

“There’s something wrong with your baby’s head,” the doctor reported. The week after the ultrasound Jennifer had a fetal MRI.

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Life with ‘the little warrior’ 19 months after encephalocele surgery

Owen Sheridan familyPhoto courtesy of Lorrin Sell

Nearly every morning in the quiet, early light, 19-month-old Owen Sheridan awakens not with a cry but with a steady, strong-willed yell, just to tell his parents he’s ready to begin the day.

“We will change his diaper and bring him into bed with us,” says Owen’s mom Jen Sheridan. “He will babble happily. And when he smiles, it is the sweetest thing.”

For the Sheridans, the smile is just one of the many miracles since Owen, the little warrior as they call him, returned home from Boston Children’s Hospital on Jan. 11, 2014.

Born with a rare growth called an encephalocele, Owen was given little chance of survival. During early development, fluid and tissue normally encased in the skull had seeped outwards forming a large mass on top of his head. The growth was so large—more than half his weight—the Sheridans weren’t able to hold him for the first four weeks of life.

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Catching up with Dominic Gundrum

Dominic 2When Dominic Gundrum first came to Boston Children’s Hospital late in 2012, his future was very much unknown.

He was born with a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead, known to the medical community as a Tessier midline facial cleft. His cleft was so large that fluid and tissue from his brain, normally encased in the skull, had seeped outwards, forming a golf ball-sized bubble underneath the skin of his forehead. It’s a condition called an encephalocele, and Dominic’s was so severe doctors weren’t sure how much they would be able to help him.

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