Stories about: encephalocele

A happy return: Catching up with Eva

The Ramirez family pose in Boston.It’s about 2,400 miles from Salt Lake City to Boston. But it’s a distance Jennifer and Vincent Ramirez are more than happy to travel to get care for their daughter Eva. The family first traveled to Boston Children’s Hospital in January of 2016 for surgery to remove Eva’s encephalocele — a surgery her doctors in Utah had said wasn’t possible.

This spring, the family was back in Boston for a follow-up visit with the surgeons who performed her surgery, Dr. Mark Proctor, neurosurgeon-in-chief, and Dr. John Meara, plastic-surgeon-in-chief.

For this visit, Jennifer and Vincent had decided to bring along their two older children, Violet, 7, and Vincent, 5, and make a family vacation of the trip, catching a Red Sox game and spending a slightly chilly day at the beach.

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A new life for Lynkin after encephalocele surgery

Toddler with big personality is thriving after encephalocele surgery.When you meet Lynkin Bell, the first things you notice are her big personality and chubby cheeks. You might also see how she adores her brother Lukis and hamming it up for the camera. But you’d never guess that this playful 14-month-old from Texas wasn’t expected to survive, never mind talk, stand or play peekaboo like a pro.

And yet, thanks to her parents’ faith and persistence — and surgery at Boston Children’s Hospital — Lynkin can do all those things, and lots more, with the gusto befitting any toddler her age.

“It’s a miracle,” says Kaylen Gaston, Lynkin’s mom. “We were told so many times she wouldn’t make it, and here she is defying all odds.”

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Year in review: Our most popular Thriving stories

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As the year comes to a close, we look back on some of the most popular stories — from basic tips to second chances to ground-breaking surgeries. Thank you to the many families and patients who kindly contributed to the success of Thriving in 2016. As always, you inspire us. Happy New Year!

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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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