What is Hydrocephalus?

February 19, 2025

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By Seraine Page 

You may be wondering, “what is hydrocephalus?” 

Hydrocephalus, known as “water on the brain,” can occur in babies and young children.  The condition causes swelling and requires quick treatment. 

Whether you’ve recently learned your baby has this condition or your child has developed it, this blog is for you. We hope to empower you with the knowledge to feel confident discussing your child’s medical condition with his or her health team.

Here’s a look at what caregivers need to know about the condition. 

What is Hydrocephalus?

This condition occurs when too much cerebrospinal fluid (CSF) collects in brain cavities, called ventricles. When this happens, the ventricles widen and cause harmful pressure on the brain’s tissues. 

It’s not a disease, but a condition that occurs in one or two of every 1,000 babies born in the U.S., according to the Johns Hopkins Medicine website. It is often diagnosed while the baby is still in the womb during routine ultrasounds.

Hydrocephalus is also the most common reason children have brain surgery. 

Symptoms of Hydrocephalus

Depending on your child’s age, hydrocephalus symptoms may look different. The symptoms range depending on your child’s age and the stage of development when discovered.

Symptoms in infants may include:

  • Vomiting
  • Sleepiness
  • Poor feeding 
  • Unusually large head
  • Scalp that looks thin and glistening 
  • Scalp veins with unnatural fullness 
  • Downward gaze of your baby’s eyes
  • Bulging soft spot on top of your baby’s head

Older children may experience: 

  • Nausea 
  • Lethargy
  • Vomiting
  • Headache
  • Memory loss
  • Vision problems
  • Balance problems
  • Poor coordination  
  • Developmental delays
  • Sudden personality changes 
  • Difficulty looking up when the head is face-forward

It’s important to get medical attention immediately if you notice any of the symptoms in your child. 

Hydrocephalus Diagnosis: What Parents Need to Know

A diagnosis usually happens when a parent or pediatrician notices a child’s head rapidly swells and enlarges. Sometimes, the diagnosis comes during a prenatal appointment. Generally, a pregnant woman will find out in her third trimester with a fetal ultrasound if her baby has hydrocephalus in the womb. 

The diagnosis is typically made through both physical exams and imaging tests. 

These tests may include: 

  • Computed tomography (CT) scans – This test uses X-rays to create pictures of cross-sections of the body.

  • Magnetic resonance imaging (MRI) –  This test uses strong magnets and radio waves to create detailed images of the human body.

  • Ultrasound – This test uses high-frequency sound waves to produce images of internal organs and tissues within the body.

Additional tests may include a lumbar catheter (spinal tap) and a fundoscopic examination to rule out similar conditions and confirm diagnosis. This condition may also be diagnosed with intracranial pressure monitoring, a test that measures pressure within the skull, according to Boston Children’s Hospital.

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What’s the Outlook for Hydrocephalus Patients?

As with any medical condition, severity varies greatly from child to child. Your child’s doctor will give you the best insights into how to treat the condition. Those with advanced hydrocephalus or co-existing health conditions will require long-term treatments. 

It’s a progressive condition, meaning symptoms often get worse over time. Because of this, most kids with water on the brain need surgery at some point.

As of right now, there is no cure for hydrocephalus, but there are treatment options.

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Treatment of Hydrocephalus

A multi-team approach is usually required to treat hydrocephalus and includes neurologists, neurosurgeons, pediatric ophthalmologists, and other specialists.

While incurable, those with the condition may be required to undergo brain surgery. 

Three options are available for hydrocephalus treatment: 

Shunt Placement

A shunt placement is the most common treatment and procedure to treat hydrocephalus. Shunts are thin, flexible tubes put into the spinal cord or brain to drain excess fluid. A doctor may place a shunt that can be adjusted outside the body, using magnetic devices. 

These tubes may need adjustment and replacement over time and require a neurosurgeon to regularly check on the shunt condition.

Success rate: Around 40% of shunts fail in children within the first two years of placement. This will require replacement due to a shunt valve malfunction or a blockage or infection.

Endoscopic Third Ventriculostomy (ETV)

This procedure is used for children who have obstructive or non-communicating hydrocephalus. This surgical procedure means a shunt isn’t needed because a bypass is created for the cerebrospinal fluid. This alternative method is only for those whose condition is “caused by a blockage of the flow of cerebrospinal fluid,” according to Cincinnati Children’s Hospital Medical Center.

Success rate: The success rate for this particular procedure is high for those who have hydrocephalus associated with brain tumors, obstructive hydrocephalus, and hydrocephalus in myelomeningocele.

Combined ETV/CPC

Endoscopic third ventriculostomy/choroid plexus cauterization, also known as ETV/CPC is a combined procedure neurosurgeons use to treat hydrocephalus. 

This two-part procedure includes creating a hole in the skull to allow an endoscope to make a hole in the bottom of the brain tissue (ventricle) to reestablish normal spinal fluid flow. The choroid plexus cauterization process burns tissue that produces spinal fluid to minimize overproduction, according to Nicklaus Children’s Hospital.

Success rate: According to the Hydrocephalus Association, some cases may see a 90% success rate. Boston Children’s Hospital reports the ETV/CPC procedure is more effective for infants less than a year old than ETV alone.

Treatment Centers for Hydrocephalus

Because the human brain is a delicate part of the human body, your child will need care from a range of specialists, including neurologists and neurosurgeons. 

Hospitals in OAW Service Areas

  • UChicago Medicine Comer Children’s –  Offers a full range of treatment options, including endoscopic procedures to bypass fluid obstruction and cerebral spinal fluid (CSF) shunting devices to drain excess brain fluid.

  • University of Arkansas for Medical Sciences –  This campus has a variety of locations, so be sure to confirm where patient plans will be developed and continued for your child’s care.

  • Oklahoma Children’s Hospital – This facility offers child-centered, age-appropriate care for infants, children, and adolescents. Patients will also have access to advanced treatment options here. 

Additional Hydrocephalus Treatment Facilities

  • Mercy (New Orleans, Louisiana) – The neonatology department here includes a variety of experienced staff who care for critically ill newborns.

  • Boston Children’s Hospital – Contact the Hydrocephalus Program at 855-503-3509 to request an appointment or get a second opinion.

  • Cincinnati Children’s Hospital Medical Center – Hydrocephalus is one of the neurological diseases the hospital staff treats.

  • Lucile Packard Children’s Hospital Stanford (California) – Packard Children’s surgeons serve on the medical advisory board of the National Hydrocephalus Association and develop safe delivery plans for women pregnant with a hydrocephalus baby.

  • Texas Children’s Hospital – From hydrocephalus to spina bifida and other challenging neurological conditions, this medical facility is equipped to help parents with children dealing with hydrocephalus.

  • Wolfson Children’s Hospital (Georgia, Florida) – This facility offers treatment and brain and spine procedures for various conditions, including water on the brain.

You can also use the Hydrocephalus Association “Find a Doctor” search tool to locate physicians within your zip code who treat the condition. 

Additional Hydrocephalus Resources & Support

Learning your child has a brain condition can feel frightening. That’s why a variety of support groups exist — to let you know you aren’t alone. Below is a list of resources and support to learn more about the condition and get help from others experiencing it as well.  

We hope the above information and resources help you or someone you know who loves a child with hydrocephalus. If you need FREE therapeutic photography services for your child, please reach out to request a professional photo session.  

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