Eric, 23

I was born premature at 26 weeks, weighing just three pounds, and developed hydrocephalus as the result of a level 3 intraventricular hemorrhage (IVH). I remained in the NICU separated from my parents for nearly 2 months before they could finally hold me, but their resilience shone throughout my hospitalization. I received a VP shunt from Dr. Michael Muhonen at Children’s Hospital of Orange County and had only one revision during my childhood years. Growing up, the left side of my body was particularly weak, which initially resulted in my parents enrolling me in several occupational therapy, physical therapy and speech therapies as a toddler. However, at four years of age, I started playing recreational soccer and basketball and grew stronger both physically and mentally.

I was valedictorian of my high school class and matriculated to UC Berkeley to study biology. My time in college was difficult, particularly the initial adjustment to the surrounding competition and feelings of being different. Many of my peers didn’t know anything about hydrocephalus or the experiences surrounding it. These feelings only intensified when my shunt from infancy failed during my second year of college (on the first day of finals week!) after eighteen years of good health. Following the hospitalization, my experience brought me a very limiting perspective. I feared for what came next — the next shunt failure, the stigma surrounding illness, a deeper sense of unrelatability to my peers, and shame for placing my loved ones in a position of worry. However, I found solace in the deep conversations I had with my closest friends and Dr. Muhonen over the course of the next few years. I found strength in what I initially perceived to be a failing limitation.

I’m now a graduate setting my sights on medical school. I’m using my gap year to work as a scribe and research assistant for Dr. Muhonen in Neurosurgery. I’m currently working on a study evaluating two different surgical incision approaches for pediatric patients who received a VP shunt.

My perception of hydrocephalus has changed. I no longer view it as a limitation nor a difference to be scared of, but a unique quality that brings out my greatest strengths while nurturing my weaknesses. I hope others can find hope and opportunity through their diagnosis like I did. I understand that not everyone can relate to my experience nor can I provide regimented advice. But I know that there are people working tirelessly to advance treatment for this condition. I was blessed to find amazing opportunities and mentors, and I hope to offer the same opportunities to someone as a practicing physician in the future. Your experiences will only make you stronger and more grounded. Take pride in all that you have overcome.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story of hope with us! We will feature the amazing individuals in our community on our website and through social media. Submit your story today!

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

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