Stories about: spina bifida

No holding her back: Robotic procedure gives girl freedom from urinary incontinence

little girl on the beach after robotic artificial urinary sphincter implantation
PHOTOS COURTESY OF MADI’S FAMILY

Seven-year-old Madi loves being active, whether that means dancing, doing gymnastics or riding her bike. Born with spina bifida, she doesn’t let the diagnosis slow her down — but the chronic urinary incontinence it can cause was disruptive and stressful. Known as neurogenic bladder, this condition occurs when the nerves to the bladder and urethral sphincter do not work properly and can lead to urinary retention or persistent urinary leakage.

Read Full Story

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.

Read Full Story

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.

Read Full Story

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.

Read Full Story