“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. …
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.
Like many moms, Brenda Jackson worried about the transition to middle school for her son Sam. He had had mysterious wetting accidents ever since potty training. Doctors had diagnosed an overactive bladder and tried everything — behavioral interventions, medications and dietary changes.
Nothing worked. Fortunately, Sam attended a small Montessori school where all the kids knew and accepted each other.
But as he was getting ready for fifth grade, the specter of middle school, and the teasing that comes with early adolescence, loomed. “That’s a new ball game,” says his Brenda. “We knew we had to take care of this.”
Because Sam also had constipation, the urologist at his Midwestern children’s hospital sent him to a gastroenterologist to see if addressing it would reduce Sam’s wetting accidents. The urologist put him on a medication meant to stop the spasms that were making him lose bladder control. It didn’t work.
It was such a relief to know that Sam was able to have a less invasive procedure. Boston Children’s made a very stressful process easier and had the confidence to take care of it.
Sam’s doctors and parents continued to search for answers. A dimple on the boy’s lower back suggested something wrong with his spinal cord, so Sam was referred for an MRI of his spine.
“We got a call the next morning that Sam had a thoracic syrinx [a collection of fluid inside the spinal cord’s central canal] and that we needed to see a neurosurgeon,” says Brenda. “The neurosurgeon at our hospital had never seen one.”
The local radiologist and neurosurgeon thought the fluid was compressing the nerves that controlled Sam’s urinary tract.
After two more MRIs, the doctors recommended surgery for the syrinx. It would involve inserting a shunt (tube) inside Sam’s spinal cord to drain the fluid into his abdomen — a highly invasive operation that carries a risk of causing paralysis. Plus, shunts often fail over time and have to be replaced.
Something didn’t ring true for Brenda. Her skepticism grew. She researched Sam’s condition and found few pediatric hospitals had published anything about it. One of those that did was Boston Children’s Hospital.