Robert, 41

Robert, congenital hydrocephalusHere is my story.

When I was two weeks old, one lung was 90% filled with mucous, and the other lung collapsed. I had cerebral spinal fluid (CSF) on the brain. At two weeks of age, I had my first shunt placed. I have been blessed to be alive for 41 years and counting. I have gone through at least 12 or so revisions in my life, the latest being 3 years ago. I live as normal a life as possible with hydrocephalus and would not be here today if it weren’t for God!

To parents of babies or children with hydrocephalus, I would say you have a miracle baby/kid! Cherish every moment. My mother, for the longest time, felt guilty for what happened to me. She has lived with this her entire life! I say, God makes NO mistakes! Their child is “fearfully and wonderfully made!” Forgive yourself for feeling this way if that is the case for you, and make the most of the life that you have been given!

To parents of teens and/or young adults with hydrocephalus, I would say focus on your child’s health. Watch for signs and symptoms, as each one is unique. Be pro-active in their care before, during, and after hospital visits. Communication is key!

Tell us about your journey with hydrocephalus!

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

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

If you would like to share your story, please email it to: with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.


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