Hydrocephalus in Children

The body makes something called cerebral spinal fluid (CSF) around the brain and spinal cord. This clear, colorless fluid flows through the chambers in the center of the brain (ventricles), and eventually, the bloodstream reabsorbs it.

When your child has hydrocephalus, this fluid either doesn’t flow properly out of their brain or isn’t reabsorbed well. Instead, it collects in their brain’s ventricles. This increases pressure in their head, keeping their brain from working like it should.

If your child is born with hydrocephalus, we call it congenital (present at birth) hydrocephalus. Common causes include brain and spinal cord conditions, like aqueductal stenosis, spina bifida, premature birth complications or infections during pregnancy, like rubella.

If hydrocephalus develops later, it’s known as acquired hydrocephalus. Common causes are head trauma, brain or spinal cord tumors or infections, like meningitis.

Types of hydrocephalus

There are several different types of hydrocephalus.

• Communicating hydrocephalus happens when the CSF can flow freely throughout the ventricles, but the fluid isn’t getting absorbed back into the blood stream as much as necessary. This causes the fluid to build up and cause brain pressure.
• Non-communicating hydrocephalus (obstructive hydrocephalus) happens when CSF is blocked so it can’t leave the ventricles.
• Normal pressure hydrocephalus (NPH) causes the ventricles to gradually get bigger but doesn’t increase brain pressure.
• Hydrocephalus ex-vacuo happens when a head injury or stroke causes the damaged brain tissue around the ventricles to shrink. This gives room for the ventricles to get bigger without a change in pressure. This type doesn’t need treatment.
• Arrested hydrocephalus can happen when there may have been hydrocephalus at some point, but the brain and body compensated for it. Even though the ventricles stay enlarged, they’re no longer growing or causing any symptoms.

Diagnosing Hydrocephalus in Children

Sometimes, we can diagnose congenital hydrocephalus before birth during an ultrasound in pregnancy. Other times we don’t know it’s there until after your child is born.

Babies born with hydrocephalus may have a large head. The soft spot (fontanelle) at the top of their skull may bulge. Some babies may have a downward gaze called sun-setting eyes. You may also notice they vomit often and are always sleepy. Older children with acquired hydrocephalus may also vomit. They might get headaches a lot and have vision problems. Many children with hydrocephalus can have developmental delays.

Early diagnosis is very important because it lets us quickly treat the condition. This improves the chance for good results and recovery. Untreated hydrocephalus can be fatal.

What to expect during diagnosis

Whether your child is born with hydrocephalus or develops it later, we’ll do tests to confirm that’s what’s going on. We’ll go over each step with you so you can feel more at ease.

If your child is a little older, they may meet with one of our child life specialists. These caring providers help your child understand what’s happening by talking and playing with them. They may stay with your child for testing and treatment, too. We want to be sure you and your child are as comfortable as possible.

To diagnose hydrocephalus, we’ll give your child a neurological exam. This helps us see how their brain and nervous system work. Our team may also take pictures of their brain using an ultrasound, CT scan or MRI.

Meet Our Hydrocephalus in Children Team

Your child will have a supportive team of expert pediatric healthcare providers from different specialties. These providers work together to plan your child’s care and meet regularly to talk about their progress. Your child’s care team may include:

• Pediatric neurosurgeons
• Pediatricians
• Pediatric neurologists
• Pediatric radiologists
• Pediatric anesthesiologists
• Pediatric plastic surgeons
• Pediatric physical medicine and rehab physicians
• Pediatric physical therapists
• Pediatric occupational therapists
• Pediatric speech therapists
• Pediatric audiologists
• Child life specialists

Surgery is the only treatment for hydrocephalus in children. Before your child has brain surgery, our team will go over everything you can expect before, during and after the procedure. Your child may have one of these surgeries:

• Shunt: This is the most common surgery for hydrocephalus. We’ll place a flexible tube in your child’s brain to drain extra CSF to another area of their body where it can be reabsorbed.
• Endoscopic third ventriculostomy (ETV): If your child is older than 2 and has obstructive hydrocephalus, we may do this procedure. We’ll make a small opening in the floor of their brain’s third ventricle. This opens a path for spinal fluid to flow in and around their brain.

In some rare cases of hydrocephalus, your child may need reconstructive surgery. This depends on how the swelling and pressure have affected their skull.

Life After Treatment of Hydrocephalus in Children

Many children with hydrocephalus lead active lives after surgery. Our team will keep a close eye on any complications that may come up with regular checkups.

Our team will also help your child with their cognitive and physical development. This could mean having pediatric physical or occupational therapy. Or they may see a hearing specialist (audiologist) or speech therapist.

We also offer family counseling and training so you can help your child grow to be the best they can be. And if your child needs more individualized medical and nursing care, we can help with that, too.

Taking the Next Step

Your world may feel like it’s spun out of control when you learn your child has a serious health condition — especially one that’s only treatable with brain surgery. And while the stress of this may be a lot to process, you know you want them to have the best care possible. Cleveland Clinic Children’s expert and compassionate pediatric neurosurgery and neurology providers are here to help. Our team guides you and your child through every step of diagnosing and treating their hydrocephalus. And we do it as if your child were our own.