Hydrocephalus can affect infants, children, adolescents, and young adults. Some children are diagnosed before birth or soon after delivery. Others develop symptoms later because of infection, bleeding, trauma, tumor, Chiari malformation, spina bifida, or another condition that affects the movement or absorption of fluid around the brain.

In babies, parents may notice rapid head growth, a bulging soft spot, poor feeding, vomiting, unusual eye movement, or increased fussiness. In older children and teens, symptoms may include headaches, nausea, trouble walking, changes in behavior, problems with attention, or a decline in coordination. These signs can overlap with many other medical issues, so specialist evaluation matters.

NJPNI evaluates each patient based on age, symptoms, imaging, medical history, and development. The care plan may involve monitoring, further testing, surgery, or coordination with other pediatric specialists. Families are encouraged to ask questions and share what they have noticed at home, since those details can help guide care.

Cerebrospinal fluid surrounds the brain and spinal cord. It helps cushion the nervous system and supports normal brain and spine function. Hydrocephalus develops when this fluid builds up and cannot move or drain the way it should. As fluid collects, pressure can rise inside the skull and affect delicate brain tissue.

The cause of hydrocephalus is not the same for every child. Some cases are related to a blockage in the normal fluid pathways. Others involve problems with absorption. Some children have hydrocephalus along with another neurologic or developmental condition. Understanding the cause helps the neurosurgery provider recommend the right treatment plan.

Parents do not need to have all the answers before requesting an appointment. If imaging has shown enlarged ventricles, excess fluid, or another concern involving the brain, NJPNI can review the findings and explain what they may mean for your child.

At NJPNI, evaluation may include a detailed medical history, physical exam, neurologic assessment, review of prior imaging, and discussion of your child’s symptoms. When needed, the team may recommend additional imaging or coordination with pediatric neurology, ophthalmology, developmental specialists, or other providers involved in your child’s care.

When to Seek a Pediatric Neurosurgery Evaluation

The first visit is also a time for parents and caregivers to ask questions. Common questions include:

What does the imaging show?

Is treatment needed now?

What are the risks of waiting?

Which surgery may be recommended?

What should we watch for at home?

How often will follow-up be needed?

Clear answers help families move from uncertainty to a care plan.

How Diagnosis Guides Treatment Options

Not every child with extra fluid needs the same treatment. The right plan depends on the cause, age of the patient, symptoms, imaging findings, medical history, and whether pressure is affecting the brain.

Some children need close monitoring. Others need surgery to redirect fluid and reduce pressure. Hydrocephalus is most often treated with a procedure that helps cerebrospinal fluid drain safely. In certain cases, the surgeon may discuss endoscopic third ventriculostomy, known as ETV, or another approach based on the anatomy of the ventricles and the cause of the blockage.

Families do not have to understand every medical detail before asking for help. The role of the specialist is to explain the findings, outline the options, and recommend a plan that fits the patient’s needs.

For many patients, hydrocephalus surgery involves surgically inserting a shunt system. A shunt is a small device that redirects excess fluid from the brain to another area of the body, often the abdomen, where it can be absorbed. This helps manage pressure and protect brain function.

A brain shunt is usually placed while the child is under general anesthesia. The surgeon makes small incisions, positions the catheter, and places the valve system so fluid can drain at a controlled rate. The details of the operation vary based on the child’s age, anatomy, diagnosis, and prior medical history.

A shunt system may include tubing and a valve that helps control the flow of fluid. The goal is to move fluid away from the brain so pressure can be managed. Families receive instructions on what to expect after surgery and which symptoms may signal a possible problem.

Shunt systems can work well for many children, but they require follow-up. A shunt may need evaluation if symptoms return or if there are signs of blockage, infection, or malfunction. NJPNI helps families understand what to watch for and when to call.

What Families Can Expect before Surgery

Before surgery, the NJPNI team reviews your child’s diagnosis, imaging, and medical needs. Parents receive instructions about eating and drinking before anesthesia, medications, arrival time, and what to bring to the hospital or surgical setting. The team also explains the goals of the procedure, expected recovery, and signs that should be reported after discharge.

This preparation can help reduce fear for both parents and patients. Younger children may need simple reassurance and comfort items. Older children and teens may want to understand what will happen, how they may feel afterward, and when they can return to school or activities.

What Happens During the Procedure

During shunt surgery, the surgical team works to create a safe pathway for spinal fluid to drain away from the ventricles. A valve helps regulate flow. The destination site is chosen based on the patient’s needs, with the abdomen being a common location.

The care team monitors the patient closely during anesthesia and recovery. After the procedure, nurses and doctors watch for pain, fever, vomiting, changes in alertness, incision concerns, and neurologic changes. Imaging may be used when needed to confirm placement or assess progress.

Recovery and Follow-Up Care

Recovery varies. Some patients improve quickly as pressure is relieved, while others need time for symptoms to settle. Your child’s team will provide instructions for incision care, activity limits, bathing, medication, school return, and follow-up visits.

Follow-up care is a major part of long-term management. A shunt can help manage hydrocephalus long term, but it needs regular monitoring because blockage, infection, malfunction, or revision surgery can occur. Parents are taught to watch for possible signs of malfunction or infection, such as headache, vomiting, fever, swelling near the incision, irritability, sleepiness, vision changes, or a return of earlier symptoms.

Do Kids Outgrow Shunts?

Children usually do not simply outgrow a shunt. Some patients may need adjustments, revisions, or additional evaluation as they grow. The need for future care depends on the child’s diagnosis, how the device is functioning, and whether symptoms or imaging change over time.

Choosing hydrocephalus doctors for your child can feel overwhelming. Families want medical skill, but they also need communication, patience, and a team that understands how stressful a neurosurgical diagnosis can be.

New Jersey Pediatric Neuroscience Institute provides pediatric neurology and neurosurgery care for patients with a wide range of brain, spine, and nervous system conditions. The Morristown office gives families in Morris County and nearby communities access to specialty care close to home.

Pediatric Neurosurgery Experience

Children are not small adults. Their nervous systems are still developing, and their care requires training focused on pediatric anatomy, development, communication, and family support. NJPNI’s team works with infants, children, adolescents, and young adults, with care plans shaped around each patient’s stage of growth.

For hydrocephalus, experience matters because treatment may involve diagnosis, imaging review, surgical planning, postoperative care, long-term monitoring, school-related concerns, and coordination with other specialists. Families benefit from a team that can support the full care path.

Care That Includes the Whole Family

A diagnosis affects the entire household. Parents may feel pressure to make decisions quickly while also managing fear, work, siblings, school, transportation, and insurance questions. NJPNI’s care model is built around communication and support.

At appointments, the team aims to explain medical findings in plain language. Families are encouraged to ask questions, share observations, and speak up about changes they see at home. That information can help doctors understand how the condition is affecting the patient’s daily life.

Coordination With Other Specialists

Some patients need care beyond surgery. Depending on the child’s needs, care may involve pediatric neurology, developmental evaluation, physical therapy, school support, nutrition, psychology, or other medical providers.

NJPNI helps families understand which services may be helpful and how follow-up should be organized. This coordinated approach can make the process easier to manage, especially for patients who need long-term monitoring.

Support before and After the Office Visit

Families often think of treatment as the surgery itself, but support before and after the visit matters. NJPNI provides patient resources, forms, postoperative instructions, and guidance for families navigating care. The office team can help with scheduling and appointment questions so families know how to move forward.

If your child has already been diagnosed, you can bring prior imaging, reports, hospital records, and a list of symptoms or questions. If you are seeking another opinion, the team can review available information and discuss what may be recommended next.

Hydrocephalus was once called “water on the brain”. The term comes from two Greek words: “hydro” meaning water and “cephalus” meaning head. Very simply put, hydrocephalus where extra fluid builds up inside the head. Except, the fluid is not actually water, it is cerebrospinal fluid (CSF). CSF is a clear fluid. It surrounds the brain and the spinal cord.

Inside the brain are spaces which are called ventricles. When CSF accumulates, it causes those spaces (ventricles) to become abnormally large. That enlargement of the ventricles can possibly cause harmful pressure on the tissues of the brain.

Typically, large ventricles are a sign of hydrocephalus.

There are four of ventricles that make up the ventricular system. They are connected by narrow passages. Imagine it as a house with four large rooms all connected by narrow hallways.

The CSF flows through the ventricles then exits at the base of the brain. From there it bathes the surface of the brain and the spinal cord. It is eventually reabsorbed into the bloodstream.

CSF is continually produced. That is why it is so important that nothing blocks the ability of the CSF to be absorbed. If the flow is blocked, the CSF cannot be absorbed, and it will result in an over-accumulation of fluid (hydrocephalus).

When someone has congenital hydrocephalus, it means that it is present at birth. Congenital hydrocephalus may be caused either during fetal development or because of genetic abnormalities.

When hydrocephalus is acquired, it developed at the time of birth or after. Acquired hydrocephalus can affect people of any age and may be caused by disease or injury.

When CSF is able to flow between the ventricles, but is then blocked after it exits the ventricles, it is known as communicating hydrocephalus. Think of it as the spaces in the brain being able to communicate with each other.

Sometimes, the flow of cerebrospinal fluid is blocked along one of the narrow passages (remember the hallways in the house!) connecting the ventricles. When this happens, it is called non-communicating, or obstructive, hydrocephalus. One of most common causes of hydrocephalus is “aqueductal stenosis”. This happens when the small passage (the aqueduct of Sylvius) between the third and fourth ventricles becomes narrow.

Benign external hydrocephalus (BEH) is defined by rapid increase in head circumference in infancy, with neuroimaging evidence of enlarged cerebrospinal fluid (CSF) spaces. BEH was postulated to predispose to subdural hematoma, neurocognitive impairments, and autism. Benign external hydrocephalus in infants, characterized by macrocephaly and typical neuroimaging findings, is considered as a self-limiting condition and is therefore rarely treated. 

Benign enlargement of the subarachnoid spaces in infancy (BESS or BESSI) also known as benign external hydrocephalus (BEH) is, as per the name, a benign enlargement of the subarachnoid spaces in infants. It usually involves the frontal lobe subarachnoid spaces, and it is characterized clinically by macrocephaly or frontal bossing. The cause is not clear. It has been described as a variation of normal development of the brain, whereby there is a temporary accumulation of cerebrospinal fluid (CSF) in the frontal region. 

It is also thought to be due to the delayed development or delayed function of the arachnoid villi at the sagittal sinus. Most children outgrow this condition and do not need a shunt or any other surgery to treat the hydrocephalus.

1. Zahl SM, Egge A, Helseth E, Wester K. Benign external hydrocephalus: a review, with emphasis on management. Neurosurg Rev. 2011 Oct;34(4):417-32. doi: 10.1007/s10143-011-0327-4. Epub 2011 Jun 7. PMID: 21647596; PMCID: PMC3171652.

Symptoms of hydrocephalus can vary significantly. It is important to remember that they can be different from person to person. However, there are some typical symptoms that are often seen with hydrocephalus.

When an infant has hydrocephalus, one of the most obvious signs is when their head size rapidly increases. They will typically have a large head size. This is because the sutures of the skull have not yet closed. Babies may also be irritable, experience vomiting, and excessive sleepiness. Also, they may have abnormal eye movements, such as an eye turning in or out. Or their eyes may appear driven downward with the whites of their eyes being very noticeable between the iris and the eye lid. This is called “sunsetting” and many times the baby will look as if they are surprised. Another symptom of hydrocephalus is seizures.

Older children and adults may experience headaches, nausea, vomiting, swelling of the optic disk (this is called papilledema and can be seen during an eye exam), and blurry or double vision. Also, there may be problems with balance and coordination, changes in the way they walk. Developmental milestones may slow down or may be lost. Other symptoms include lethargy, drowsiness, irritability, changes in personality and changes in cognition. There may even be memory loss.

Normal pressure hydrocephalus typically affects adults over the age of 60. The symptoms of normal pressure hydrocephalus include problems with walking, issues with bladder control such as urinary incontinence and frequency, and mental impairment with confusion and forgetfulness. It’s important to note that these symptoms are very similar to other conditions such as Alzheimer’s disease and Parkinson’s disease, so normal pressure hydrocephalus is sometimes misdiagnosed.

The first step in diagnosing hydrocephalus is often a through a clinical neurological evaluation. If the clinician suspects hydrocephalus, they will usually order imaging of the brain. The imaging may be an ultrasound, an MRI, or a CT scan. The physician may also decide to use a pressure monitoring technique such as placement of an ICP (intracranial pressure) monitor.

The most common treatment for hydrocephalus is placement of a shunt. This is done through a surgical procedure. The purpose of a shunt is to redirect the CSF to another part of the body where it can be absorbed.

A shunt is a flexible plastic tube. The shunt system also has a valve. One end of the tube (catheter) is placed within the ventricle inside the brain and the other end is placed in the area of the body where the CSF will be absorbed. Most often, the end of the catheter is in the abdomen, but sometimes it can be in other areas such as in a chamber of the heart or in the area around the lungs. The valve is located along the catheter route and it maintains and regulates a one way flow of cerebrospinal fluid. The entire shunt system is located within the body. At no point will a part of the shunt be located outside of the skin.

There a different types of shunt valves. Some valves are called “fixed pressure valves” which means their setting stays constant and cannot be changed. Other valves are programmable valves. These valves can have their settings adjusted to allow more or less of the CSF fluid to drain. The setting is changed by using a special magnet.

Another surgical procedure used to treat hydrocephalus is called endoscopic third ventriculostomy or ETV. In this procedure, a small camera is used to visualize the ventricular surface. Then, a small tool is used to make a tiny hole in the floor of the third ventricle. That hole allows the CSF to bypass the area that is obstructed so it can flow to the reabsorbed. A limited number of patients can be treated with an ETV. There is an ETV success score scale which helps to determine which individuals are better candidates for the procedure.

It is important to have regular follow-up with your neurosurgeon as per their recommendations. During those visits, your surgeon can assess your neurological status and look for signs of the shunt not working properly.

Some possible complications are mechanical failure of the shunt valve, kinking or disconnection of the shunt tubing, obstruction of the tubing, the need to lengthen the tubing, and infection.

Sometimes the complications can cause other problems such as over-draining and under-draining. When the shunt “over-drains” it is allowing the CSF to drain at a rate faster than it is able to be produced.

When over-draining occurs, it can cause the ventricles to collapse which can cause headaches, bleeding (subdural hematoma), or slit-like ventricles (call slit ventricle syndrome).

If the shunt does not allow the CSF to drain properly (under-draining), the hydrocephalus symptoms return.

One other possible shunt complication is infection. Sometimes, when the shunt system is infected, there may be redness and tenderness over the area of the shunt tubing. Other symptoms of a shunt infection are fever and soreness of the neck and shoulder muscles.

Above all, it is important to seek immediate medical attention any time you suspect the shunt may not be working properly.

Timely diagnosis and treatment of hydrocephalus is very important for a successful outcome.

Some children with hydrocephalus may require an interdisciplinary approach for their care, combining treatment from medical professionals as well as educational specialists. Many children who are diagnosed with hydrocephalus go on to lead very normal lives with relatively few limitations.

The same is true for individuals with normal pressure hydrocephalus. If left untreated, the symptoms of NPH usually worsen over time. Prompt diagnosis and treatment improves the chance of a positive outcome and good recovery.

Seeing specialists at a Hydrocephalus Center is so important. These board-certified neurosurgeons, neurologists and team members know what kind of care your child needs. They will make sure your child sees the pediatric ophthalmologists, and other specialists and gets the right imaging studies, without exposing your child to dangerous radiation. Do not be afraid. Speak to your team of experts. Call 973-326-9000 with any questions or concerns.

If your child has been diagnosed with hydrocephalus, has symptoms that may point to increased fluid or pressure, or needs follow-up after prior treatment, New Jersey Pediatric Neuroscience Institute is ready to help.

Our Morristown team provides pediatric neurosurgery evaluation, treatment planning, surgical care when needed, and ongoing support for patients and families. We will help you understand the diagnosis, review available treatment options, and plan the next step with your child’s comfort and long-term health in mind.

Contact NJPNI to schedule an appointment with our pediatric neurosurgery team in Morristown, NJ.

1. What are 4 types of hydrocephalus?

Answer: The four types of hydrocephalus are congenital, acquired, normal pressure, and communicating.

2. What age does hydrocephalus start?

Answer: Hydrocephalus can start at any age, from infancy to adulthood.

3. What is the danger of hydrocephalus?

Answer: The danger of hydrocephalus is increased intracranial pressure, which can lead to neurological damage and disability.

4. At what age is hydrocephalus diagnosed?

Answer: Hydrocephalus can be diagnosed at any age, but it is most commonly diagnosed in infancy.

5. Can hydrocephalus cause death?

Answer: Hydrocephalus can cause death, especially if left untreated.

6. How long can a person with hydrocephalus live?

Answer: The lifespan of a person with hydrocephalus depends on the severity of the condition and the amount of treatment they receive.

7. Can hydrocephalus cause sudden death?

Answer: Yes, hydrocephalus can cause sudden death, especially if left untreated.