At 2 days old, Hannah had surgery to close the half dollar-sized opening in the base of her spine, but only time would tell how her spina bifida would impact her everyday life.
“While in the NICU, Hannah also needed a shunt placed to drain the spinal fluid from her skull due to her hydrocephalus,” said Hilary, Hannah’s mom. “Hannah has always handled really hard stuff really well. As a mom, my heart aches, but Hannah, as a patient, has always been strong – physically and emotionally – from the start.”
Hannah started physical therapy at 3 months old to help strengthen her muscles. At home, she used a stander to teach her feet and legs how to bear weight so they were ready for what was to come. The goal for Hannah was to hit every infant milestone – rolling, sitting, crawling and walking – which all came in time. By age 1, Hannah was fitted with leg braces and shoes to help her learn how to walk. By age 2, she was using a walker on her own!
At 3, Hannah was ready for preschool, even riding the bus on her own. For the next few years, she kept up with her physical therapy while making friends and excelling at school. She learned to maneuver her wheelchair and walk with crutches more quickly but, at age 7, her parents grew concerned.
Hannah hit a growth spurt and, with it, came changes in her sleeping, leg pain and frequent loss of balance.
A sleep study confirmed Hannah had sleep apnea, which required the use of a CPAP machine at night. Given her underlying medical conditions, the family met with neurology to determine what was causing the other changes.
An MRI revealed a cyst was pushing against Hannah’s cervical vertebrae, putting pressure on her nerves. The cyst could rupture at any time so, a few days later, Dr. Chen surgically removed it. Dr. Chen also found nerve endings had tethered themselves to scar tissue around her spinal cord, so she tediously detached them to allow Hannah’s spine to move more freely as she grew.
It took a year, and a lot of therapy, but Hannah regained her strength, coordination and no longer needs the CPAP machine.
Today, Hannah is 11 and will be in 5th grade this fall. She loves school, cooking, doing crafts and setting goals. She hopes to one day swim in the Paralympic Games and have a puppy.