Nick Story: Spina Bifida Awareness Month

Fifteen-year-old Nick lives with his parents, Kyle and Amanda, and his older sister, Katheryn. A quiet young man with a sharp mind and a big heart, Nick has a deep passion for wrestling. Whether it’s WWE, AEW or wrestling video games, he is a walking encyclopedia of knowledge, lighting up when sharing his insights with others. Nick also loves spending time with the family’s two dogs: a Leonberger and a Bernese Mountain Dog. But Nick’s journey has been uniquely shaped by his diagnosis of Spina Bifida, a congenital condition where the spine and spinal cord do not develop properly during pregnancy. 

Amanda was 22 weeks into her pregnancy when an intensive ultrasound revealed that Nick had Spina Bifida. When asked to explain the condition, Amanda describes it simply: “The baby’s spine is like a zipper, but one tooth/chain is missing. Because of that, part of the spinal cord develops outside the body and becomes damaged.” 

Their diagnosis journey, Amanda says, was like many families’ in the Spina Bifida community–one that included an offer to terminate the pregnancy. Rather than make a rushed decision, Nick’s family turned to online support groups to better understand what life with Spina Bifida could look like. While initial medical projections were grim, hearing the lived experiences of other families gave them hope. “On paper, almost every checkbox for Spina Bifida complications was there. But what no doctor can tell you is who your child is and their personality,” Amanda reflects. 

Nick was born at Mt. Sinai Hospital and was immediately transferred to SickKids Hospital for surgery to close the opening in his spine, a procedure known as Myelomeningocele Repair. After two weeks of inpatient recovery, Nick was sent home, but within just two days, he developed Hydrocephalus, a common complication in which cerebrospinal fluid builds up in the brain. He returned to SickKids to receive a shunt, which helps drain the excess fluid and relieve pressure. 

Spina Bifida affects each individual differently, depending on which nerves were damaged. For Nick, it primarily impacts his lower body, leading to challenges in gross motor development and bladder and bowel function. Delays in hitting developmental milestones were also due in part to trunk weakness following his back surgery. From an early age, Nick began physiotherapy at Holland Bloorview Kids Rehabilitation Hospital and was later referred to Grandview Kids, a turning point in his family’s journey. 

Amanda remembers how much easier life became once Grandview Kids came into the picture. “Having all his therapies in one place, locally, was such a relief,” she says. At Grandview Kids, Nick accessed essential services like physiotherapy, occupational therapy, speech-language pathology and even attended Grandview School. He also participated in bike clinics, swimming lessons and many Family Engagement-led events. “It’s been easy to reach out whenever we’ve had concerns,” Amanda shares. “The physiotherapists gave us practical advice, and the occupational therapists even helped make our home more accessible for Nick.” 

Raising a child with physical, communicative or developmental needs often demands parents to grow in ways they never imagined. Amanda, once a self-described timid person, has become a confident and outspoken advocate for the Spina Bifida community. She was a founding member and Director of Medical Education of Spina Bifida Families of Canada and created a national Facebook group to help other families feel supported and connected. “This journey has shown me how strong we really are,” she says. 

Amanda is now focused on empowering Nick to find his own voice. She beams with pride as she talks about his growing independence and how he’s learning to express his needs, preferences and goals, which include driving, living independently and pursuing a meaningful career. “He’s more than a diagnosis,” she affirms. “It’s a joy to watch him develop into his own person.” 

Spina Bifida changed their lives, but not in the way they were first led to believe. “It was scary at first,” Amanda admits. “But it’s been absolutely worth it.”