Stories about: spina bifida

‘Spina bifida is a diagnosis, not a destiny’

(Photo courtesy of Amanda Kern Photography)

In February, when New Englanders have long since wearied of the icy, mud-caked snow piles, an 11-year-old from Florida is seeing it — in all its splendor — for the first time.

And it’s magical.

“I can’t believe it! I never thought I’d get to see anything like this.”

There is a lot Adam Paul, now 14, wasn’t certain he would see or do.

Adam was born with spina bifida.

“I had to grow up a lot faster,” says Adam. “I had to think — What is going to happen to me? What am I going to have to go through today?

Spina bifida – a term meaning “split spine” – happens when the brain, spinal cord and/or meninges (protective covering around the brain and spinal cord) do not completely develop. It is the most common neural tube defect (NTD) in the U.S.

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July highlights: Mother’s intuition, music therapy & more

Catch up on what you may have missed on Thriving last month. Our staff takes a look back at a few of this month’s favorite posts.

A mother’s intuition—and a fall down the stairs—save a little girl’s life

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Liz Beaulieu is likely the only person in the world who can say she saved her child by falling down the stairs.

Her daughter, Arielle, was just 4 days old. Liz was carrying her downstairs when she slipped. Not sure whether Arielle had hit her head, she whisked her to her local ER.

“She seemed fine, and they said that she looked fine,” Liz says. Still concerned, though, Liz kept a close eye on Arielle over the next couple of days. That’s when she noticed something.

“I noticed the slightest flicker of her eyes,” Liz recalls, “and decided that I wanted to get it checked out.” She took Arielle back to the hospital, asking them to do a CT scan. The hospital demurred, but Liz insisted, telling them she needed the peace of mind.

“So they did the scan,” Liz recalls, “and they found an enormous tumor.”

Read about Arielle and her family.

Kyle Cooper waits 18 years for oral surgery

Kyle at prom c/o VeraAnn Photography
Kyle at prom c/o VeraAnn Photography

Kyle Cooper was born with hemifacial microsomia (HFM), a craniofacial anomaly that resulted in the left side of his face being underdeveloped. It meant his face was noticeably uneven and barely any of his teeth touched. “I made it through and got used to it, but I couldn’t eat things like meat because it would take me three hours to chew.”

In February, Boston Children’s Hospital Oral Surgeon-in-Chief Dr. Bonnie Padwa reconstructed the 18-year-old’s upper and lower jaws and his chin. He returned to school just in time for prom and graduation.

Learn more about Kyle.

My life after concussion: Finding a new game

Esther playing soccer before her concussion and practicing her golfswing after her injury
Esther playing soccer before her concussion and practicing her golfswing after her injury

Fifteen-year-old Esther Lovett’s life turned upside down after she suffered a concussion. An excellent student and star athlete, Esther was seriously challenged by the prolonged affects of her concussion.

Read Esther’s words of wisdom for other teens.

For baby Joy, music and medicine are in perfect harmony

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James Danna enters the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU) with the tools he’ll use to treat Joy, a 9-month-old patient recovering from open-heart surgery. Instead of a stethoscope or scalpel, James carries only small percussion instruments and a guitar.

He gently opens the door to Joy’s room, taking a quick read of her heart rate—138. Joy is a tiny little thing in a great big bed, under bright lights and tethered to multiple machines. Over the course of her multiple procedures for a congenital heart defect, the noise of the monitors, air conditioning and loudspeakers have made for a very wary baby. Her medical chart describes Joy as “staff phobic,” as most adults who enter her room poke and prick her.

But Joy has met James many times before and knows him to be safe. She locks her eyes on him and waits for the music to begin. Keeping his distance, James quietly hums a tune while strumming a few chords on his guitar.

Joy smiles, crosses her little legs and nods to the beat.

Listen to James and Joy.

Tyler’s story: 20 surgeries with a smile

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Tyler Bois is a boy with goals. His career aspirations run the gamut. Some days, he dreams of playing football with his favorite team—the Dallas Cowboys. Others, he wants to open a pizza shop, perhaps called “Slice of Ty” or “Ty’s Pizza Palace.”

For now, the nine-year-old stays busy with every day kid stuff—playing with his golden retriever puppy, planning for Cub Scout camp, dancing in the school talent show, skiing and wakeboarding. Somehow between all of these activities, Tyler has squeezed in 20 surgeries.

Born with spina bifida and a Chiari malformation (a congenital defect in which the back parts of the brain slip into his spinal cord), he approaches each surgery with a trademark smile and can-do attitude.

Meet Tyler.

 

 

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Tyler’s story: 20 surgeries with a smile

20150624_Tyler20thSurgery-1Tyler Bois is a boy with goals. His career aspirations run the gamut. Some days, he dreams of playing football with his favorite team—the Dallas Cowboys. Others, he wants to open a pizza shop, perhaps called “Slice of Ty” or “Ty’s Pizza Palace.”

For now, the nine-year-old stays busy with every day kid stuff—playing with his golden retriever puppy, planning for Cub Scout camp, dancing in the school talent show, skiing and wakeboarding. Somehow between all of these activities, Tyler has squeezed in 20 surgeries.

Born with spina bifida and a Chiari malformation (a congenital defect in which the back parts of the brain slip into his spinal cord), he approaches each surgery with a trademark smile and can-do attitude. Before his last operation Tyler wowed Boston Children’s Hospital staff with an impromptu dance from his hospital bed.

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Best foot forward

The Packards

The Packards gather around the boulder in their backyard to pose for the picture. Katie passes her bright pink crutches to her mother, and although she needs them to get many places in her life—from school to hip-hop dance class, she’s able to lean against this rock without them.

The photos go well, of course, because the Packard family—mom Cara, dad Brian, brothers Dan and Kevin and sister Laura—is so tightly knit. They’ve come together in ways small and large to help Katie navigate life with spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain.

But once the photo shoot is over, the rest of the family scatters across the backyard while Katie is still leaning.

“Mom,” she calls, “can you hand me my crutches?”

There she is, a 12-year-old girl, balanced precariously on the edge of the rock, stuck between childhood and adolescence, independence and dependence—between the desire for a regular life and the reality that there are simply things her body can’t do.

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