Stories about: spina bifida

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 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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My sister, my inspiration

Listen to Colton and Lena talk about their relationship. 

My little sister, Lena, was born in Denver, Colorado, on Feb. 24, 2000. My recollection of that day and the weeks that followed is hazy — not only because I was just six years old, but also because I was being shuttled between several relatives while my parents attended to some “medical problem” my sister had, which I couldn’t really understand.

The words spina bifida didn’t mean much to me, but between my parents’ solemnity and the fact that — as it was explained to me — the doctors needed to cut into my sister’s back with a laser, I started to get an abstract, naive idea of the seriousness of the whole thing.

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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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