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. …
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.” …
For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play.
“These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn.
Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium. …
Sierra 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.