Nancy

My name is Nancy, and I was born with hydrocephalus and spina bifida. My journey began with a choice. Late in my mother’s pregnancy, an ultrasound revealed a bump above my tailbone and fluid accumulating in my brain. Doctors shared options with her, but my mom fiercely refused, choosing to risk our lives to give me a chance.

I was born in April 1997. Because I couldn’t breathe properly, specialists immediately placed me on oxygen. In the days that followed, I had various surgeries, including shunt placement and multiple revisions, the opening of one nostril, the closing of the skin over my spine, and a tracheal tube placement.

After a second shunt revision and a three-month hospital stay, I finally went home to a meticulously clean environment and a deeply supportive family.

My early childhood years were a blur of doctor visits, but miracles followed. By age two, my tracheal tube was removed. By age three, I was walking, and at age seven, I underwent my most recent shunt revision, which we were told was due to growth.

Life brought about many challenges, but also triumphs. I overcame bullying in elementary school, spoke out for disability awareness, graduated high school, and entered college. Later, after sustaining a work injury, I spoke up about how it exacerbated my disability, which unfortunately led to a discriminatory dismissal. Years later, while navigating post-injury symptoms, I feared I would need another brain surgery. Thankfully, I didn’t.

Today, I know that my life is a complete miracle. To anyone navigating hydrocephalus or similar diagnoses: you are not alone. You are not a label or an object; you are a living testimony of difference. Keep sharing your story, keep shining bright, and make a difference in this world

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Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest, regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.