Caring for Your Child with Hydrocephalus

It’s common to have countless questions about the condition and how to help your child live the best life possible. Here you will find essential tools and resources to help you advocate for your child, make informed decisions, and manage your child’s daily needs.

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No parent is prepared to hear the words, “your child has hydrocephalus,” and at that moment, everything changes. The condition can be hard to process and can cause parents to experience a range of emotions. You may feel frightened, overwhelmed, or feel a sense of powerlessness and grief as you come to terms with your child’s condition. Do not despair! Many babies born with hydrocephalus go on to lead full lives, though the road you envisioned for your child might not be the road you journey down together. Hydrocephalus is a complex and unpredictable condition that requires lifelong management. Parents caring and nurturing a baby or child with hydrocephalus need to prepare for the road ahead with careful education and planning.

Know that you’re not alone. We are here to support and guide your family through both the great days and not so great days. Also, we will provide trusted, high-quality resources to help lighten the burden so your child can live the best life.

As Your Child Grows

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.

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Navigating Your Care

Once you receive a hydrocephalus diagnosis, choosing your doctor is one of the most important decisions you will make. We have developed resources to help you learn more about the different types of specialists who care for people with hydrocephalus. We also offer suggestions on finding the ones that are right for you.

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Related Health Conditions

It is not unheard of for people living with hydrocephalus to have other symptoms or comorbidities (conditions). These could have preceded the diagnosis or appeared well after. Many people have to manage additional health problems including, but not limited to, headaches, chronic pain, and epilepsy.

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Sending your child off to school for the first time can cause fear and anxiety. Preparation is key. The following resources are intended to guide and help you manage your child's school and hydrocephalus.

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Stories from our Community

Hydrocephalus knows no boundaries. You can be born with it, acquire it, or develop it as part of the aging process. We experience different symptoms and we encounter various challenges and obstacles throughout our lives. Everyone has a unique story to tell. Our community is brave, resilient, and inspiring. Read stories from individuals living with hydrocephalus and their loved ones and share them with your friends and family.

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