Stories about: kyphosis

Nicholas stands tall with Prader-Willi syndrome

Nicholas, who had spinal fusion surgery, shakes hands with Dr. Glotzbecker while his parents watch.
Nicholas presents an award to his surgeon, Dr. Michael Glotzbecker. Nicholas wears headphones in public to protect himself from sensory overload. [PHOTO: MICHAEL GODERRE/BOSTON CHILDREN’S]

When he rose from his chair to shake his surgeon’s hand, 17-year-old Nicholas Peters stood 4 inches taller than he had just a few months before. “Thank you for making me feel better,” Nicholas said to Dr. Michael Glotzbecker, the surgeon from the Boston Children’s Hospital Spinal Program who had operated on his spine. With a little prompting from his parents, Nicholas added, “I can bend over to play with my jeep.”

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Gracie’s complex spine

PHOTOS COURTESY OF THE BRENNAN-NEEF FAMILY

Halloween 2018 was no ordinary ghouls’ day for Gracie Neef. She and both her parents dressed up as the witches from “Hocus Pocus.” To Gracie’s delight, her father’s costume included a long, blonde wig. Even more unusual, Gracie was an inpatient at Boston Children’s Hospital. “The fact that Gracie was going to spend Halloween in the hospital was at first really sad,” says Gracie’s mother, Lucie Brennan. “But we went trick or treating all around the hospital. It was surprisingly fun.” Two weeks later, Gracie had spinal fusion surgery.

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Building a healthy heart through cardiac fitness

Joao, who has Ebstein's anomaly, poses in New York City. This spring, Joao DeToledo will be stepping onto the volleyball court to play for his high school team for the first time. It will be a proud moment for the high school senior from Somerville — playing a competitive sport is a goal he hadn’t dreamt possible just a few years ago. Though Joao has always loved sports, he was born with Ebstein’s anomaly, a congenital heart condition that, until recently, has forced him to spend a lot of time on the sidelines.

When Joao expressed frustration at not being able to participate in gym and sports as much as he’d like, his cardiologist, Dr. David Fulton, recommended the Cardiac Fitness Program at Boston Children’s Hospital. The program, one of the first of its kind, offers kids and adults with congenital heart disease a chance to exercise in a safe environment.

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Seeing Phoenix

spina bifidaIt seems like people have been looking at our son Phoenix — without seeing him, without talking to him — since before he was born.

When I was pregnant and the ultrasound showed severe spina bifida and kyphosis (an excessive forward curve in his spine), the specialist told us he had never seen a spine like Phoenix’s. He wasn’t sure how it could be treated and recommended terminating my pregnancy.

My husband Mike and I chose not to.

Phoenix was born on June 29, 2009, with a lesion at the base of his spine. His spinal cord and nerves were exposed, so his first surgery was a skin graft to cover the lesion. On top of spina bifida and kyphosis, our son was diagnosed with clubfoot and hydrocephalus.

It felt like Phoenix was a patient before he was baby. He had 16 specialists — an orthopedic surgeon, neurosurgeon, ophthalmologist, physical therapist and more.

Phoenix’s appointments gobbled up 40 hours a week. One doctor would remind me to stretch his legs with every appointment change; another to patch his eye.

He didn’t get to be baby, and the back and forth among all of Phoenix’s specialists left me feeling insecure and unsettled as a mother. Was I doing anything right?

Doctor after doctor talked at me. Every visit was a constant checklist.

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