Hydrocephalus | Frequently Asked Questions

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Contact the Hydrocephalus Program

Q: Will my child be OK?

A: The severity of hydrocephalus can vary widely from child to child. The good news is that most children do well with treatment. Children who have hydrocephalus that is very advanced when diagnosed or have another complication may need more long-term treatments.

Your clinician can give you a better sense of what your child will need over the long term, depending on his or her individual condition.

Q: Is hydrocephalus common?

A: Experts estimate that as many as one in 500 children is born with hydrocephalus.

Q: Does my child have to cut back on physical activity?

A: The amount of physical activity your child can do will depend on your child’s age and symptoms. Ask your child’s clinician about specific restrictions for your child.

Head trauma can make hydrocephalus worse, so your child should always wear a helmet for activities like bike riding.

Q: Is my child going to need surgery?

A: Since hydrocephalus is a progressive condition — the symptoms get more severe over time — most children eventually need some type of surgery.  

Q: What do I need to watch for if my child has hydrocephalus?

A: Tell your doctor if you notice a change in your child’s:

  • head shape or size
  • movement
  • activity level
  • temperament
  • appetite
  • cognitive functioning (memory, learning, speech and language)

You should seek medical help right away if your child has:

  • headaches
  • poor appetite
  • difficulty or changes in standing, walking or moving
  • nausea
  • vomiting
  • protruding veins in the scalp
  • sudden periods of irritability with no apparent cause
  • sudden personality changes
  • problems in mental functioning (memory or reasoning)
  • problems in speaking or communicating
  • incontinence
  • double vision
  • blurred vision
  • constant downward gaze or difficulty lifting the eyes to look up when the head is facing forward
  • periods of inconsolable, high-pitched crying
  • seizures

Q: Can doctors diagnose hydrocephalus while a baby is still in the womb?

A: Boston Children’s Advanced Fetal Care Center can diagnose babies with congenital problems like hydrocephalus before they are born.  

Q: Is there a cure for hydrocephalus?

A: While there is no cure for hydrocephalus, the treatments have an excellent success rate, especially with early diagnosis.  

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- Sandra L. Fenwick, President and CEO

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