Stories about: Chiari Malformation

Catching up with Abby

scoliosisWhen you look Abby DiCocco, a 13-year-old from Clifton Park, N.Y, it’s hard to believe that the rising eighth grader, avid swimmer and budding triathlete ever had any problems with her spine.

Abby was diagnosed with scoliosis when she was in first grade and had surgery to remove a Chiari malformation, an abnormal meeting between the brain and spinal cord, at Boston Children’s Hospital.

One year after that surgery, Abby’s orthopedic surgeon Dr. John Emans, director of the Boston Children’s Spinal Program, prescribed a brace to treat her scoliosis. However, despite everyone’s best efforts, Abby’s scoliosis progressed as she grew, and her curve reached 65 degrees by age 11.

That’s when Emans suggested a new option — MAGEC surgery. Remote-controlled magnetic rods are surgically implanted into the spine and periodically lengthened to treat early-onset scoliosis. Abby was the first at Boston Children’s to receive this surgery, which reduced her curve from 65 to 10 degrees.

That was two years ago.

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Mother’s Day wisdom

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With Mother’s Day around the corner, Thriving gathered some words of wisdom, advice and comfort from a few of our moms for you. Wishing mothers and their families a happy and healthy Mother’s Day!

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One mother’s story: Staying strong for my daughter’s brain surgery

Photo credit: Stacey Guptill
Photo credit: Stacey Guptill

Maddie, our third child of four and our smallest, always seemed to be fighting off some type of illness. When she hit puberty, her health struggles seemed to get worse. I kept telling my husband and Maddie’s primary care physician something was not right, but I couldn’t quite put my finger on it.

Maddie knew, too. She had hand tremors, her grades started to slip, and my otherwise well-liked, social daughter was becoming very withdrawn. A sleepover with a friend was not even worth it for her — it would sap her energy and set her back a few days in school. She spent most of her time at home, lying in bed, trying to cope with her headaches and fatigue. There were mornings before school that she’d make it to the top of the stairs with her backpack on and then just lie down on the floor. She would leave for school dragging, and I would just sob.

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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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