Contributor Bio: Amanda and Chance

My son Chance was diagnosed with spina bifida in the fall of 2010. At the time I knew very little about the birth defect. I was seventeen weeks pregnant when we learned of his diagnosis. We learned of so many challenges he might face in his lifetime. As doctors shared the news it was tough to think beyond all of the medical terminology. We were told he’d have hydrocephalus, chiari malformation, paralysis, and incontinence. We were told so much would be wrong and it was tough to find hope. We were given options after the diagnosis and were told we could have given up – but we knew we wanted to let him have a “chance” to show us how amazing his life could be.

In the first year after his birth we learned our son was going to redefine our own perception of perfect. He was perfect and in so many ways was just like any other baby. However, he endured so much early on. He was born with an opening in his back where his spinal cord never fully formed. At four hours old he endured a surgery to repair his birth defect and spent 18 days in the NICU. During his time in the NICU he required a shunt to help treat his hydrocephalus. Without it he would endure brain damage, however, we learned early on that the device is prone to malfunction. By the time our son was 8 months old he endured 11 surgeries, most of which were to fix his shunt. His brother and sister nicknamed him “Super Chance” since he was two months old as they’d fly him around the house. He’s nearly 8 years old now and has since endured a total of 16 surgeries for his shunt, chiari and tethered cord. We’ve learned the struggles he’s faced are just a small part of his life and have devoted so much energy to helping ensure he lives the best life possible.

One of the biggest fears we had before our son was born was if he’d need intervention to manage his bladder and bowel care. Truthfully, the thought of cathing frightened me. I never perceived it as a normal thing and didn’t want to have a child that would require it. Due to Chance’s spina bifida he was born with a neurogenic bladder and bowel. By the time he was preschool age we knew he needed help managing this care to achieve social continence. We’ve learned that cathing is no big deal and truthfully so much easier than I once feared. He learned to self cath by the time he began first grade and we all recognize it is an important part of his care that helps ensure he stays healthy.

When I came so close to giving up after the diagnosis I knew it was a way I was being redirected to do more good. Over the years I’ve volunteered to do awareness and advocacy work with our local Spina Bifida Association chapter and founded a nonprofit, Redefining Spina Bifida. I pour my heart and soul into creating awareness, advocating and educating families on so many aspects related to spina bifida. Families deserve to learn the truth and the reality of this diagnosis; however, they also deserve to learn of the hope and beauty that exists when a child like our son is embraced to live his life to the fullest.

Our son Chance is now in second grade performing at grade level in a mainstream classroom. He’s an active boy who loves swimming, sled hockey, wcmx, video games and WWE wrestling. He’s faced challenges over the years and his spina bifida certainly keeps us on our toes, however, most days he’s a normal child living his life and having fun. We share his story in hopes that it will bring hope and inspire others who may join us on this journey raising a child with spina bifida.


All Posts by Amanda and Chance

Our Fear of Cathing after My Son's Diagnosis with Spina Bifida

Understanding My Son’s Neurogenic Bladder

Join Us On Our Journey

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