Stories about: spina bifida

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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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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Teen with spina bifida and service dog walk a path to independence

A photo of mobility service dog Euro, Adam Paul's "counter-balance"

If a picture is worth a thousand words, then how much is this picture worth?

For Debbie Paul, who received the above photo in a text from her son, it is priceless. “It was a turning point in my mind,” she says.

That turning point took place on July 7, nearly two weeks following her son Adam’s graduation as a service-dog handler. Adam, who is 14, going on 15, has spina bifida, a birth defect that involves the incomplete closure of the spinal cord. He was profiled in an October 2015, Boston Children’s Hospital Thriving blog.

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