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October - Spina Bifida Awareness Month!

Updated: Apr 10

With October being Spina Bifida Awareness month, we wanted to share some information about what Spina Bifida is and share a little bit about our journey!

What is Spina Bifida?

Spina Bifida is a congenital birth defect that occurs within the first 28 days of pregnancy (often before a woman even knows she is pregnant). Classified as a neural tube defect, spina bifida affects the spinal cord and varies in severity depending on factors such as the level of the lesion along the spinal cord. Because the nervous system is involved, symptoms range from none or very mild to severe symptoms that may include loss of movement or tightness in the legs, bladder, kidney, and bowel problems, and hydrocephalus (commonly known as water on the brain).

Our Story

At 20 weeks pregnant, we got the news at our anatomy scan that our son Cash would be born with Spina Bifida. We heard words like permanent damage, no quality of life, severely disabled, and termination of pregnancy but we knew God had something greater in store. Cash made his grand entrance in April of 2018. Within 24 hours of delivery, Cash underwent surgery to close the opening in his spine. It was then that we learned Cash had the most severe form of Spina Bifida, myelomeningocele affecting L4 of his spine. Cash spent the next six weeks in the NICU undergoing six different surgeries, one of those surgeries included a ventricular shunt placement in the ventricles of his brain to drain excess fluid caused by hydrocephalus. Hydrocephalus is a very common diagnosis secondary to Spina Bifida. When Cash was finally released from the NICU, we spent the next couple of weeks adjusting to life at home but we started to have difficulties feeding. Cash seemed to have difficulty breathing that got worse each time we were feeding him. Feeds became very challenging and a huge source of stress. My husband and I knew something wasn’t right so we took him in to see our neurosurgery team. We were quickly re-admitted to the hospital where we were told Cash had symptomatic Arnold Chiari II. Another very common diagnosis secondary to Spina Bifida. From there, we spent an additional 6 weeks back in the PICU and had several more surgeries to reduce the symptoms of Chiari including, Chiari decompression, g-button placement, and a tracheotomy.

Cash is now 5 and has had his g-button (2019) and trach removed (2021). He attends kindergarten and receives the PT and OT both at school and at Beelieve. Cash is a full-time wheelchair user and a full-time sports enthusiast. His love and knowledge of sports is immediately obvious in just about any conversation that you have with him. He has a zest for life that is truly infectious. In Cash’s free time, he is practicing his wheelchair basketball skills as he aspires to be an athlete on the USA Paralympic basketball team one day. Cash also enjoys making TikTok videos to inspire the world and those living with different abilities. Cash’s start to this world was difficult and not without challenges but his impact and zest for life far outshine the dark days we once faced. We know the road ahead may not always be smooth and we know there are more challenges to overcome but through faith and strength, we will overcome and Cash will continue to be the Spina Bifida warrior that he is!

We hope you learned a few things about Spina Bifida and wanted to share some additional resources as well as our blog (which I must admit, really needs some updating). Feel free to pass this along to families that may be looking for a glimmer of hope in a new and scary journey!

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