Dealing with your child’s hydrocephalus diagnosis can be overwhelming. It’s common to have countless questions that range from learning more about what hydrocephalus is to what one can expect a child’s experience to be across the life spectrum.  Some parents may need medically urgent questions answered and others may be searching for answers to much broader questions.

YOU’RE NOT ALONE, and the Hydrocephalus Association has created this portal as a resource for all of your questions. The journey of raising a child with hydrocephalus may be challenging and we’re committed to providing information to help you make the best decisions, advocate for your child, and connect with other parents.

Helpful Resources

The Hydrocephalus Association provides essential tools and resources that enable you to have more control of your life. We provide the following documentation and can help connect you with resources for questions or issues you may encounter.


Learn about hydrocephalus, including treatment options and emergency medical situations.

Hydrocephalus Resource Library (HRL)

Find educational articles about a variety of topics related to hydrocephalus.

Trending Topics

What are the topics we are receiving the most inquiries on right now? Through blogs, articles and videos, we provide you with information from medical professionals and Hydrocephalus Association support staff on the topics that are important to you.

Community Networks

Meet parents and caregivers who are navigating similar experiences with their children. Visit these portals:


Be informed and current about hydrocephalus by tuning into interactive, free webinars on a variety of topics.

4 Comments for : Parents
    • Dodo
    • May 17, 2017

    I have a 15 month boy who’s diagnosed with hydrocephalus since 4 month old .he had two MRI done . His last one was when he turned a year . The water level is still th same .his head circumference as today is 53.5 inches. Still hasn’t gotten a shunt yet .dt said water will dried out but he is having crossed eye watery eyes n since may 6 he is eating less .so have anyone lived with it n the water dried out please

    • Reply

      Honestly, I would get a second opinion. A pediatric neurosurgeon is the best way to go! My so. Was 6 months old when he was diagnosed, and his first doctor that observed some issues and chopped them up to something else every time…I almost lost him. I then went and found the most amazing pediatric neurosurgeon and she immediately performed surgery! He is now 8 years old, and thank the good Lord above has had no issues, but before his surgery, his symptoms were very similar to your sons. Don’t settle! A momma always knows…you’re in my prayers and God bless your family!

  1. Reply

    As you grow, so will your shunt. My daughter neurologist said “there is enough tubing in there for her to grow to 8 feet tall”

    • Kelly piwell
    • February 15, 2017

    What age do you grow into your shunt?

Leave a Comment

Change in Theme Options or on the cause edit page
Change in Theme Options or on the cause edit page
Change this in Theme Options
Change this in Theme Options