“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.
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.