Living with Spina Bifida: A Parent’s Perspective

Our journey with spina bifida began before our daughter was even born. The diagnosis came during my pregnancy, and while it was overwhelming, we immediately began preparing ourselves for the challenges ahead. Spina bifida presents many unique challenges, but one thing I’ve learned is that with the right mindset, your child can live a fulfilling and joyful life. Over the years, we’ve worked closely with medical professionals to ensure she receives the care she needs, from surgeries to mobility aids. One of the most important things we’ve done is to empower her to be as independent as possible. Whether it’s encouraging her to navigate her wheelchair or advocating for herself at school, we’ve always focused on her abilities rather than her limitations. In this blog, I share our experiences, from managing surgeries to helping her build confidence. I also touch on how we’ve learned to navigate the healthcare system, seek out the right resources, and find a supportive community of parents. If you’re a parent of a child with spina bifida, know that you’re not alone—there are countless resources and support systems available to help.