Stories about: spina bifida

A world of difference: Postsurgical pain relief for Will

Will poses with a Curious George doll after receiving pain relief for surgery
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

Will is a good-natured, active boy who loves riding his bike, playing with LEGOs and caring for his family’s two cats. So when he emerged from anesthesia following surgery to release a tethered spinal cord last August, it was clear he wasn’t feeling like himself. “He would be very combative and then very sleepy, explains Kathleen. “I just kept saying, ‘That’s not him.’” Kathleen and her husband, Eric, later learned that Will’s behavior was a consequence of the morphine he was being given to treat his postsurgical pain.

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Looking at the whole child: Coordinated care for spina bifida helps Jeffrey thrive

8-year-old boy with spina bifida smiles at the camera

Jeffrey Marotz and his family may have driven to Boston Children’s Hospital from their home in New York, but it was really the boy’s feet that brought him here.

Born with severe spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain, Jeffrey had also been diagnosed with clubfoot, a related orthopedic condition that causes the foot to twist unnaturally.

Previous surgeries hadn’t worked and the braces that had been custom made for then three-year-old Jeffrey didn’t fit correctly. “Nothing was working,” says his mom, Michelle.

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Pushing past the pain: Morgan’s journey with spina bifida

Dr. Warf with Morgan, who has spina bifida.
“Be glad you can use your legs now. You might not always be able to.”

That’s what Morgan Gautreau was told by a neurosurgeon in Alabama six years ago, one of many doctors she had seen seeking a solution for her nearly constant back pain caused by a tethered spinal cord, a condition where the spinal cord is attached to tissue around the spine and can’t move freely within the spinal canal. Morgan’s tethered cord was due to spina bifida occulta, a type of neural tube defect where the spinal column doesn’t develop properly.

Luckily, she and her family didn’t take his words to heart, but kept looking for help.

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Coming together from worlds apart for spina bifida care

Molly Gotbeter giggles impishly as she accepts a sugar cookie and frosting from a nurse. She’s sitting patiently on an exam table waiting to see one of her favorite people in the world — Benjamin Warf, MD, director of Neonatal and Congenital Anomaly Neurosurgery at Boston Children’s Hospital.

For this visit to the spina bifida clinic, Molly has traveled from her home in Charleston, South Carolina. But her journey to Dr. Warf and Boston Children’s has been much longer.

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