Ethan

Ethan was born in March 2005, three weeks early. His body was premature, but his head measured full term—something doctors had anticipated. His hydrocephalus was diagnosed prenatally during his mother’s first ultrasound, when excess fluid was found in his brain. That moment changed everything. 

After further testing, we were referred to a specialist who took over our birth plan. Hearing the word hydrocephalus for the first time was earth-shattering. Ethan is our third child, and there were no medical concerns with his sister or our other son. We didn’t truly understand what this diagnosis meant. We were given a pamphlet and sent home. 

Like many parents, we turned to the internet. That only made things scarier. We learned more about the brain than we ever expected, and with every search came more uncertainty. 

At just one week old, Ethan received a ventriculoperitoneal (VP) shunt to treat his hydrocephalus.  He did well for quite a while with that shunt.  

In August 2019, everything changed. Ethan became lethargic, and, concerned, we brought him to St. Louis Children’s Hospital to be evaluated. At 12:00 pm, we were told his shunt had failed. That shunt lasted 14 years—something we now recognize as remarkable. By 5:00 pm, he was scheduled for emergency brain surgery. The shock was overwhelming. True to who Ethan is, he woke up from surgery, cracking jokes. His recovery was quick, and he returned to being himself faster than we expected. 

Growing up, Ethan experienced both physical and cognitive delays, but his joy was constant. He smiled easily, laughed often, and connected deeply with others. He began therapies around six months old and has participated in them throughout his life. 

Milestones came on Ethan’s timeline. Crawling, standing, and walking took longer. Early on, he used a walker and later transitioned to leg braces through elementary and middle school. His childhood included frequent medical appointments—neurology, neurosurgery, pediatrics, ophthalmology, orthopedics—along with ongoing physical therapy. 

From the beginning, we knew his life and school would be a marathon, not a sprint. Ethan was enrolled in the Special School District (SSD) throughout his education, and they were incredible partners from early childhood through graduation. There were countless Individualized Education Program (IEP) meetings, goals set, progress tracked, and milestones achieved. Ethan met each challenge with determination, humor, and an outgoing personality.

One of the greatest joys was watching Ethan grow alongside his friends in SSD—learning, growing, and reaching milestones together. 

Today, Ethan is 20 years old, and we’re entering a new chapter. He’s learning job and adult life skills while continuing to grow in independence. He loves creating on his computer and sharing his work on his personal YouTube channel. Ethan understands that he is different and that communicating his thoughts can be harder—but that has never stopped him from enjoying life or sharing love with his family. 

He’s our joker—the one who keeps us laughing and reminds us what matters most. 

Ethan’s journey with hydrocephalus has taught us patience. It has been hard watching our child face challenges others don’t—but the victories matter. Watching Ethan lift his head for the first time, stand, then walk, and then no longer need a walker or braces. Seeing him read, play games with his siblings, or confidently order for himself at a restaurant. These moments are everything. 

This journey hasn’t been easy, but taking things one step at a time, facing challenges together as a family, and celebrating every milestone made all the difference. As Ethan tells us, “I am not weird, I am just different. “I want to leave you with my message to new parents, and a message from Ethan to others living with this condition:  

A Message to New Parents 

Hydrocephalus is scary. But it doesn’t define your child’s potential. Take it one step at a time. Lean on family, friends, and this community. Progress will come. 

Ethan’s message to others living with hydrocephalus is simple: 

Grow into who you are. Learn at your own pace. Don’t be discouraged. It will come in time. 

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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!

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