Living with Congenital hydrocephalus
A condition in which a baby is born with too much fluid in the brain, causing pressure and, often, a larger head.
Understanding Congenital hydrocephalus
CSF is the clear fluid around the brain and spinal cord. The excess widens the brain's fluid spaces (ventricles) and can press on brain tissue. It has genetic and non-genetic causes and can occur alone or with other differences as part of a syndrome. It is seen during pregnancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Large head (macrocephaly)
- Bulging forehead and wide soft spots
- Seizures
- Intellectual disability and delayed motor skills
- Eyes that do not line up (strabismus)
- Widened brain spaces (ventriculomegaly)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Hydrocephalus Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Hydrocephalus Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Hydrocephalus Association
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Causes include changes in the L1CAM gene (the most common), changes in many other genes, brain or spinal cord differences, infections, bleeding in the brain, trauma, certain drug exposures, or a brain tumor present at birth.
Also known as: congenital dilatation of cerebral ventricles; congenital hydrencephalus; congenital hydrencephaly; congenital hydrocephaly; hydrocephalus in newborn; primary hydrocephalus
Patient organizations
- Hydrocephalus AssociationCongenital hydrocephalus · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital hydrocephalus.
Explore research for Congenital hydrocephalus
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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