Stories about: Spina Bifida Center

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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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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‘Spina bifida is a diagnosis, not a destiny’

(Photo courtesy of Amanda Kern Photography)

In February, when New Englanders have long since wearied of the icy, mud-caked snow piles, an 11-year-old from Florida is seeing it — in all its splendor — for the first time.

And it’s magical.

“I can’t believe it! I never thought I’d get to see anything like this.”

There is a lot Adam Paul, now 14, wasn’t certain he would see or do.

Adam was born with spina bifida.

“I had to grow up a lot faster,” says Adam. “I had to think — What is going to happen to me? What am I going to have to go through today?

Spina bifida – a term meaning “split spine” – happens when the brain, spinal cord and/or meninges (protective covering around the brain and spinal cord) do not completely develop. It is the most common neural tube defect (NTD) in the U.S.

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