Hydrocephalus is a chronic neurological condition caused by an abnormal accumulation (buildup) of cerebrospinal fluid (CSF) within the brain’s ventricles (cavities). Hydrocephalus happens when there’s an imbalance between CSF production and absorption, leading to enlarged ventricles and increased pressure on the brain, which can affect its function.
Hydrocephalus impacts a wide range of people, from infants to older adults. Symptoms in children can include an enlarged head, irritability, or developmental delays, while adults may experience headaches, vision problems, or balance issues. Normal Pressure Hydrocephalus (NPH), seen in adults over 60, may present with difficulty walking, memory issues, or urinary incontinence, often going undiagnosed.
- Over 1,000,000 people in the United States currently live with hydrocephalus, per the Hydrocephalus Association.
- In the U.S., 1 out of 770 babies develops hydrocephalus each year.
- A recent study estimates 800,000 older Americans may have NPH, with over 80% of cases unrecognized or untreated.
While there’s no known way to prevent or cure hydrocephalus, surgical treatments like shunt placement (to drain excess CSF) or endoscopic third ventriculostomy (ETV) can manage the condition effectively, often improving quality of life when diagnosed early.
Books on Hydrocephalus
| Hydrocephalus: A Guide for Patients, Families & Friends by Chuck Toporek and Kellie Robinson Published 1999, this guide by authors with hydrocephalus offers practical advice and insights for parents on shunts and daily life. Children with Hydrocephalus: A Guidebook for Families & Friends by Lisa Holloway |
Having Hydrocephalus: A Book for Children and Families by Ellen and Brian Kaczor Published 2012, a simple story explaining hydrocephalus and shunts to kids, with parent support info. All About Me (And My Shunt) by Terri Rice Bellush |
– a mix of practical advice, emotional support, and educational tools to help families understand hydrocephalus, manage its challenges, and connect with others. Child Neurology Foundation KidsHealth by Nemours National Institute of Neurological Disorders and Stroke (NINDS) Johns Hopkins Medicine Children’s National Hospital Seattle Children’s HospitalResources for parents of children with hydrocephalus
Hydrocephalus Association
Offers extensive resources including a helpline (1-888-598-3789), support networks, and guides on managing hydrocephalus from infancy through adulthood.
Provides a disorder directory, family support tools, and info on hydrocephalus’s neurological effects for parents seeking expert guidance.
A parent-friendly guide on hydrocephalus, covering symptoms, treatments, and how to support a child’s daily life.
Delivers scientific details on hydrocephalus causes, treatments, and shunt management for parents wanting in-depth knowledge.HealthyChildren.org (American Academy of Pediatrics)
Offers practical advice on hydrocephalus care, shunt monitoring, and developmental support from pediatric experts.
Detailed resource on pediatric hydrocephalus, including diagnosis, surgery options, and long-term care tips.
Provides family resources, seizure action plans, and info on shunt care from a leading pediatric neurosurgery team.
Features resources on hydrocephalus treatment, family support services, and connecting with local networks for parents.
Our children with Hydrocephalus
* Listed children often have multiple diagnoses and attention should be given to the specific information in each child’s profile.
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