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There are many ways you can help children and their families get the care they need.
Hydrocephalus—also called “water on the brain”—is an umbrella term used to describe several different types of problems that cause cerebrospinal fluid to either build up abnormally in the brain and intracranial space, or to drain improperly.
Learning more about the processes involved in hydrocephalus can help you better understand what's next and what to expect for your child. Normally:
Hydrocephalus occurs when any of the following happens:
A child with hydrocephalus may have:
The key to treating a child with hydrocephalus is early detection, prompt treatment and diligent aftercare following either shunt placement, the endoscopic third ventriculostomy procedure (ETV) or the combined endoscopic third ventriculostomy/choroid plexus cauterization (ETV/CPC) procedure, developed by Children's neurosurgeon Benjamin Warf.
What causes hydrocephalus?
Hydrocephalus is often a congenital defect—something a baby is born with—but it can also be an acquired condition, meaning it develops later in life.
While there is no known, single cause for congenital hydrocephalus, some evidence has emerged that suggests it:
Children may develop hydrocephalus as a complication of any of the following:
What are the symptoms of hydrocephalus?
Symptoms of hydrocephalus can vary widely, depending upon:
Symptoms in infants
Infants with hydrocephalus may have:
Symptoms in older children
Older children with hydrocephalus often show different symptoms, since—unlike infants, whose skull plates are still malleable and in the process of fusing—their skulls cannot expand to accommodate the buildup of cerebrospinal fluid.
Rather than a bulging “soft spot” in the skull like infants with hydrocephalus tend to display, older children are more likely to have:
You should seek treatment from a qualified medical professional right away if you notice these warning signs in your child.
Q: Will my child be OK?
A: The severity and symptoms of hydrocephalus can vary widely in from child to child. A child whose hydrocephalus is already very advanced when diagnosed—or a child who has another complication in addition to hydrocephalus—may have more serious physical and cognitive problems. These children may require more in-depth treatments over the long term than other children with the disease.
Many children with hydrocephalus do very well when their increased intracranial pressure is corrected by shunt placement or by either the endoscopic third ventriculostomy procedure (ETV) or the combined endoscopic third ventriculostomy/choroid plexus cauterization procedure (ETV/CPC), which was developed by Children's Neonatal and Congenital Anomaly Neurosurgery Director Benjamin Warf, MD.
When these treatments are combined with occupational therapy and physical therapy, children with hydrocephalus usually go on to live healthy, productive adult lives.
Your treating clinician can give you a better sense of what your child will need over the long term, depending on his individual symptoms and circumstances.
Q: Is hydrocephalus common?
A: It is believed that as many as one in 500 children has hydrocephalus. Experts are working to develop a registry that will help them better track how many children around the world have this condition.
Q: Does my child have to cut back on physical activities?
A: Whether your child needs to cut back significantly on activities—or cut back at all—depends greatly on her age and how pronounced her symptoms are.
Since head trauma can exacerbate and complicate hydrocephalus, a child with the condition should always wear a protective helmet for activities like bike riding. You should talk to your treating clinician about other recommended exercise restrictions or practices for your child.
Q: Is my child going to need surgery?
A: Since hydrocephalus is a progressive condition—meaning symptoms grow more severe over time—most children eventually need either a shunt placement, endoscopic third ventriculostomy procedure (ETV) or combined endoscopic third ventriculostomy/choroid plexus cauterization procedure (ETV/CPC) to restore equilibrium to their intracranial pressure.
Children's neurosurgeons have extensive experience performing each of these procedures in children of all ages.
Q: What do I need to look out for if my child has been diagnosed with hydrocephalus?
A: Parents of children with hydrocephalus should always be watchful for changes in their child’s:
You should seek medical help promptly if your child has:
Q: Can doctors diagnose hydrocephalus while a baby is still in the womb?
A: Children’s Advanced Fetal Care Center can diagnose babies with congenital problems like hydrocephalus in utero.
Q: Is there a cure for hydrocephalus?
A: Hydrocephalus is a progressive condition, meaning that symptoms will worsen over time. If a child’s hydrocephalus is not addressed:
As a result, for most children with hydrocephalus, more involved treatments—usually the placement of a shunt, an endoscopic third ventriculostomy procedure (ETV) or a combined endoscopic third ventriculostomy/choroid plexus cauterization procedure (ETV/CPC)— eventually become necessary.
The good news is that all of these techniques have an excellent success rate for allowing proper draining of the cerebrospinal fluid, restoring normal intracranial pressure and blood flow and preventing further neurological damage.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”