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.
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.
Cavan, Breccan, and Teagan
Story Written by Mother
Caitlin shares her family’s unique journey of having three children diagnosed with hydrocephalus, beginning with her oldest son, Cavan. Despite being told the condition wasn’t genetic, both of her younger children, Breccan and Teagan, were also diagnosed with hydrocephalus.
Diagnosed at 8 Months
Oliver
Story Written by Father
It has now been almost 4 months since Oliver had his shunt placed, and he is living life to the fullest!
Diagnosed at 5 Months
Cadogan
Story Written by Father
Cadogan, born with hydrocephalus, has faced multiple surgeries and challenges, but continues to show resilience and progress with the strong support of his family.
Diagnosed at 1 Month
Benaiah
Story Written by Mother
Nineteen. That’s how many days Benaiah’s family had with him before realizing how much he was up against. Benaiah’s story is hard, but it’s a good one, filled with hope and strength.
Diagnosed In-utero
In Memory of Our Miracle Carla
Story Written by Parent and Sister
Carla’s journey began with a revelation that resonated with uncertainty. Carla was diagnosed with congenital…
Diagnosed at Birth
Tyerria
Story Written by Mother
“Our miracle baby is now a young woman who has been truly blessed and remains steadfast.” Read Tyerria’s story, told by her mom, Terra.