Know You're Not Alone
We're here to help your child live their best life. As your child grows, our resources grow with you.
Find essential tools and resources to help you advocate for your child, make informed decisions, and manage your child’s daily needs.
Hearing the words, "your child has hydrocephalus," can feel overwhelming, but it's important to know that many children with hydrocephalus go on to live full, meaningful lives. While the journey may be different than expected, there is hope, and with proper care and support, your child can thrive.
Hydrocephalus requires lifelong management, and as a parent, you will grow stronger as you learn to navigate this condition. Education and planning are key, and together, you can help your child live their best life.
As Your Child Grows
Understanding and navigating your child's social development, daycares, cognitive development, video series from experts, and legal rights.
Navigating Medical Care
Choosing your doctor, medical team, and specialists, questions to ask your doctor, and additional resources to help you with the process.
Related Health Conditions
Managing additional health problems including, but not limited to, headaches, chronic pain, and epilepsy.
School Guides for Parents & Teachers
Resources for teachers, checklists for parents, videos from our experts, ups and down of school, and more.
A Helpful Companion for Learning at Home
Parents often look for tools that make hydrocephalus easier to talk about. My Hydro Bear has a shunt, helping children visualize treatment, ask questions, and gain confidence. It’s a supportive resource for everyday conversations and medical experiences.
You can order My Hydro Bear to help your child feel informed and supported.
Top Resources
Our association offers trusted, high-quality resources to empower your child.
Hydrocephalus Stories
from Parents in Our Community
Our community is brave, resilient, and inspiring. Read stories from parents with a child with hydrocephalus and share them with your friends and family.
Diagnosed In-utero
Myles
Story Written by Mother
Myles was diagnosed with hydrocephalus before birth and spent 44 days in the NICU. After seven surgeries, he is now thriving, running, and inspiring his family.
Diagnosed at 1 Month
Jaylani
Story Written by Mother
Jaylani’s mother shares her daughter’s congenital hydrocephalus journey, from diagnosis at one month old to successful ETV surgery and a thriving recovery.
Diagnosed In-utero
Victoria
Story Written by Mother
Victoria was diagnosed with hydrocephalus before birth due to aqueductal stenosis and continues to thrive through every challenge.
Diagnosed at 5 Months
Layla
Story Written by Mother
Layla was diagnosed with hydrocephalus after a brain bleed. Through surgeries and challenges, she continues to thrive with resilience.
Diagnosed In-utero
Kyliah
Story Written by Mother
Kyliah was diagnosed with hydrocephalus before birth and given little hope, yet today she’s hitting milestones, learning new skills, and thriving.
Diagnosed At 4 months
Camden
Story Written by Grandmother
Camden was diagnosed with hydrocephalus in infancy and had multiple brain surgeries before age two, yet his joy, strength, and love shine bright.