Layla

My family’s journey with hydrocephalus began the moment my daughter, Layla, entered the world in May 2012. She was born prematurely, so tiny, fragile, and fighting battles most adults will never face. Within days, doctors discovered she had developed a grade II intraventricular hemorrhage, a brain bleed, a term we had never heard before, yet one that instantly became part of our lives. We left the NICU hopeful, believing the hardest part was behind us. But hydrocephalus often has its own timeline.

A few months after discharge, during what we assumed would be a routine pediatric visit, everything changed. Her pediatrician noticed her eyes were fixed downward, which we later learned was a sign she was experiencing sunsetting eyes, and her head circumference had increased more than expected. He examined her quietly, then looked at me with the kind of seriousness no parent ever wants to see. Within minutes, he told us she needed to be admitted immediately. Layla had developed hydrocephalus.

The hours that followed felt surreal. One moment we were in a familiar exam room; the next, we were rushing to the hospital, meeting neurosurgeons, and hearing words like “pressure,” “ventricles,” and “shunt.” In October 2012, Layla underwent emergency brain surgery for a ventriculoperitoneal (VP) shunt. That moment was terrifying, life‑altering, and overwhelming; it became the true beginning of our story.

The early days after surgery were filled with fear and uncertainty. I watched her tiny body fight to heal, surrounded by machines and monitors, wondering how something so small could endure so much. But even then, she showed a resilience that anchored us. She recovered, she grew, and she began meeting milestones that once felt impossible. Hydrocephalus became part of her life, but it never dimmed her spirit.

As Layla grew, our family became deeply connected to the Hydrocephalus Association (HA), especially through the St. Louis WALK to End Hydrocephalus. I met the WALK chair, Stephanie Vogt, through a previous employer, and over the years she has become someone I admire. Through her, we found a community that understood the sleepless nights, the emergency room visits, the quiet fears, and the loud victories. We began participating in the annual WALKs, events that didn’t just raise awareness but reminded us that none of us walk this journey alone.

Hydrocephalus is unpredictable, and in June 2025, we faced another shunt malfunction. The fear returned instantly. The scans, the urgency, the rush to surgery. It all felt painfully familiar. But once again, Layla showed the strength she has carried since birth. She recovered with determination, reminding us that thriving doesn’t mean avoiding challenges; it means rising through them.

That experience deepened my commitment to advocacy. I wanted newly diagnosed families to know what I wish someone had told me: that hydrocephalus is life‑changing, but it does not take away the possibility of joy, growth, or a full future.

Today, Layla is a freshman in high school. She is confident, expressive, and thriving in ways that once felt unimaginable during those early NICU days. Watching her walk into her first day of high school felt like witnessing a victory years in the making. Hydrocephalus may be part of her story, but it has never stopped her from growing, learning, and becoming exactly who she is meant to be.

This year, we attended HA CONNECT, HA’s National Conference on Hydrocephalus, for the very first time, and it was a transformative experience for both of us. Being surrounded by families, adults, medical professionals, and advocates who truly understand hydrocephalus created a sense of belonging we didn’t realize we were missing. We learned valuable information, updates on treatment options, research advancements, and practical strategies for navigating adolescence with hydrocephalus. But beyond the education, we found connection. Layla met others who share her diagnosis, and I met parents who have walked this journey for years. It was emotional, empowering, and deeply affirming.

The conference reminded us that hydrocephalus is not just a medical condition; it is a community, a shared experience, and a network of support that stretches across the country. It gave us new tools, new hope, and a renewed sense of purpose. For Layla, it was a chance to see that she is not alone. For me, it was a reminder that our story matters and that sharing it may help another family feel less afraid and more supported.

Our journey is one of fear, resilience, community, and triumph. Hydrocephalus changed our lives, but it also revealed our strength. Layla continues to thrive, and through her, we continue to find hope. We share our story to encourage anyone facing hydrocephalus today: you are not alone, your journey matters, and there is a community ready to walk beside you.

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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!

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