Hydrocephalus in infants

Hydrocephalus in infants is often a birth injury related to head trauma during delivery. The condition occurs when cerebrospinal fluid builds up in the brain and spinal cord. The pressure from the extra fluid can stop the baby’s brain from working properly and lead to brain damage and even death. Learn about the symptoms and treatment of pediatric hydrocephalus and how it can be connected to medical negligence.

Did you know?

About 7 birth injuries occur for every 1,000 children born in the United States. Was your child one of them?

Free case review

What is hydrocephalus in infants?

Hydrocephalus occurs when cerebrospinal fluid (CSF) builds up in cavities called ventricles inside the brain. This extra fluid widens the ventricles and puts pressure on the brain’s tissues.

In Greek, “hydro” means head, and “cephalus” means water. In many cases, hydrocephalus is a birth injury, but sometimes it is caused by a congenital defect (birth defect).

Think of CSF as liquid bubble wrap. It protects and cushions the brain and spine. Typically, the body produces the same amount of CSF that it absorbs. However, when the flow or absorption of CSF is blocked, the fluid can build up and cause pressure in the brain.

The pressure can stop the brain from working the way it should. It can also cause brain damage or, in the worst-case scenario, death. When left untreated, hydrocephalus is fatal in 50% of patients.

The good news is that treatment, including surgery, can return CSF to normal levels and help children with this pediatric hydrocephalus live full lives.

Hydrocephalus is the single most common reason for brain surgery in young children.

Types of pediatric hydrocephalus

There are two main types of hydrocephalus in infants:

  • Communicating hydrocephalus happens when the flow of CSF is blocked at the brain’s surface after leaving the ventricles. The term “communicating” means that the CSF can still flow between the ventricles.
  • Non-communicating hydrocephalus occurs when the flow of CSF gets blocked along one or more of the skinny passages that connect the ventricles. This condition is also called obstructive hydrocephalus.

Hydrocephalus is sometimes classified as acquired or congenital. Congenital means present at birth.

Genetic factors and events that happen when a baby is growing inside the womb can cause congenital hydrocephalus. In rare cases, symptoms first appear in adulthood.

Congenital hydrocephalus occurs in 2 of every 1,000 babies born in the United States, according to UCLA Health.

Acquired hydrocephalus develops after birth. It can be caused by a head injury or brain tumor.

What causes hydrocephalus in infants?

Pediatric hydrocephalus is often a symptom of another health problem. Sometimes the condition develops during pregnancy, and in other cases, it develops after birth.

The most common causes of at-birth hydrocephalus are:

  • Aqueductal stenosis (narrowing of a channel in the brain known as the aqueduct of Sylvius)
  • Brain malformations
  • Spina bifida (a condition in which a baby's spine does not form properly before birth)

Aqueductal stenosis is the most common cause of congenital hydrocephalus.

The most common causes of acquired hydrocephalus are:

  • Brain tumors
  • Head injuries (including those from medical negligence)
  • Infections such as meningitis
  • Intraventricular hemorrhage (brain bleed)

Premature infants are at risk of brain bleeds and, as a result, hydrocephalus.

A pediatric neurologist or neurosurgeon may be able to pinpoint the cause of hydrocephalus in a baby.

In many cases, pediatric hydrocephalus is preventable and can be considered a birth injury. If you believe your child’s hydrocephalus could have been prevented, contact one of our team members for a free case review.

Need help with your child’s birth injury?

Get help paying for your child’s treatment.

Free case review

What are the symptoms of hydrocephalus in infants?

Babies with hydrocephalus often have unusually large heads. This is because the head often grows in size to handle the buildup of cerebrospinal fluid.

Head-related symptoms of hydrocephalus in infants include:

  • A rapid increase in head size
  • Bulging soft spot (fontanel)
  • Prominent scalp veins
  • Thin and glistening scalp

Other symptoms of hydrocephalus in infants include:

  • Eyes stuck looking down (“setting sun”)
  • Irritability
  • Seizures
  • Sleepiness
  • Vomiting

An older child with hydrocephalus may experience different symptoms because of the increased pressure in their head.

Signs of hydrocephalus in toddlers and older children can include:

  • A change in personality
  • Delays in walking or talking
  • Headaches
  • Memory problems
  • Nausea
  • Poor coordination
  • Vision problems
  • Vomiting

Children with this condition may start having problems in school. They often struggle to get up in the morning and stay awake.

In some cases, symptoms are obvious. However, in some children, the signs are less noticeable and progress slowly.

Sadly, when left untreated, hydrocephalus can be fatal. However, with early diagnosis and prompt medical care, children have a good chance of recovering.

Parents who think their child may have hydrocephalus should seek immediate medical attention.

Diagnosing pediatric hydrocephalus

When a medical professional suspects hydrocephalus in a newborn, they will perform a physical exam and review the child’s medical history.

A pediatrician might measure the baby’s head. This measurement is known as the head circumference.

In an older child, the physician might ask about any developmental delays.

Doctors often use these brain imaging tests to confirm pediatric hydrocephalus:

  • Computed tomography (CT scan) uses X-rays and computer technology to image the brain.
  • Magnetic resonance imaging (MRI) uses magnets, radio waves, and a computer to show images of the brain.

They may order more scans so they can see if the condition is getting worse.

Using ultrasounds to diagnose hydrocephalus in babies in the womb

An MRI or prenatal ultrasound can sometimes spot hydrocephalus in a baby growing inside the womb. An ultrasound uses sound waves to make an image of the inside of a person's body.

An ultrasound can show the size of the ventricles inside a baby’s brain.

Congenital hydrocephalus usually develops in the third trimester of pregnancy. As a result, ultrasounds performed earlier may not detect the condition.

Treatment options for infants with hydrocephalus

Medical treatment for a hydrocephalus baby will depend on several factors, including the child’s age, symptoms, and overall health.

The goal of hydrocephalus treatment is to lessen the pressure inside the baby’s head.

Doctors from different specialties typically decide the course of treatment for hydrocephalus in infants. For example, pediatric neurosurgeons, neurologists, radiologists, and ophthalmologists may help develop a treatment plan.

The majority of infants with hydrocephalus will need surgery. Some of them will also be given a type of medication known as a diuretic that helps eliminate extra water from the body.

Children with this condition may need medical monitoring for the rest of their lives.

Here are the most common surgical treatments for pediatric hydrocephalus:

Shunts

A pediatric neurosurgeon implants a shunt in the child’s brain. This flexible tube transports extra cerebrospinal fluid from the brain to another part of the body, like the belly, where it can be absorbed.

A shunt is the most common treatment for hydrocephalus. However, children with shunts often get infections and need repeat surgeries if the shunt becomes blocked or stops working.

According to the National Institute of Neurological Disorders and Stroke, 40% of shunts in children malfunction in the first year after placement and 10% per year after that.

Children with shunts generally have 2-5 operations to maintain the devices during their lifetimes. While some children only need one surgery, others may require multiple shunt revisions in a single year.

Endoscopic third ventriculostomy (ETV)

A neurosurgeon makes a small hole in the skull and guides an endoscope (a long, thin tube with a camera) through the brain. The surgeon makes a hole in the affected ventricle, which allows the CSF to bypass the blockage.

Surgeons usually perform ETV in children older than 2 with non-communicating hydrocephalus.

Choroid plexus catheterization (CPC)

A neurosurgeon burns brain tissue that produces CSF to lower the amount of fluid flowing into the ventricles. The procedure is mainly used in children younger than 2.

The thought of your child undergoing brain surgery can be scary. However, keep in mind that many children’s hospitals have been treating hydrocephalus in infants for decades. Plus, today’s pediatric surgeons use minimally invasive techniques that lower the risk of complications.

Many parents are also comforted by the fact that children are under anesthesia for these procedures. After surgery, children may feel weak and tired or sore at the site of the shunt. They typically stay in the hospital for a few days as they recover. In most cases, school-age children can return to school in several weeks.

kristin proctor registered nurse

Kristin Proctor, RN

Registered Nurse for 20+ Years

kristin proctor registered nurse

Talk to a Nurse Now

Call or chat with a caring, experienced nurse right now — we’re standing by to get you help and answers.

Prognosis for babies with hydrocephalus

When a baby is diagnosed with hydrocephalus, parents often worry about their child's health and what the future may hold. The essential thing to remember is that every child is unique and will face different obstacles.

Babies with shunts may need multiple shunt revisions as they adjust to treatment. These brain surgeries can impact a child’s development.

Some babies with hydrocephalus are diagnosed with other co-occurring conditions, including cerebral palsy, spina bifida, seizures, and vision problems. As a result, these children may take longer to hit developmental milestones and often have sensory issues and other challenges.

However, with medical treatment, different types of therapy, and special education services, most children with hydrocephalus live full, vibrant lives. Many are still able to socialize with friends, play sports, graduate high school, and attend college.

Infants who have surgery for hydrocephalus and live to age 1 will not have a shortened life expectancy because of the condition, according to UCLA Health.

Raising a child with hydrocephalus

Once parents get over the shock of a hydrocephalus diagnosis, they may feel sad, angry, or helpless. These are all normal emotions.

Parents can ease feelings of helplessness by working with their child's health care team to develop a treatment plan. Additionally, they can take steps to prevent shunt infections at home and take their child to regular medical appointments.

Parents of a baby with hydrocephalus should also learn what to do in an emergency.

Parents and other caregivers should call the child’s doctor if they notice these symptoms:

  • Change in behavior
  • Continuing headaches
  • Fever
  • Increased sleepiness
  • Persistent vomiting
  • Redness along the track of the shunt

They should call 9-1-1 if the child has these symptoms:

  • Inability to wake
  • Seizures
  • Sundowning of eyes (downward gaze)

Support groups for pediatric hydrocephalus

Parents raising children with hydrocephalus often benefit from talking to caregivers dealing with similar issues. Hydrocephalus Association has a helpline that parents can call for support and information about available resources. The group also has trained volunteers who give peer support and a community network that provides opportunities for families to connect.

Many other support groups and organizations provide resources and a sense of community to families raising children with disabilities.

One important thing to remember is that you are not alone.

In addition, children with hydrocephalus often benefit from special education and various therapies, including physical therapy and occupational therapy.

Financial support may be available through government assistance, foundations, or legal compensation.

Get pediatric hydrocephalus legal help

Medical mistakes can cause harm to an otherwise healthy baby before, during, or shortly after childbirth. When these errors cause head trauma, they can lead to hydrocephalus and be considered medical negligence.

For example, when a baby is stuck in the birth canal, doctors may use forceps or vacuum extraction to help deliver the child. Babies born by vacuum delivery are at risk of hydrocephalus, as are children with forceps delivery complications.

Obstetricians can cause a head injury that leads to hydrocephalus by failing to recognize fetal distress and moving forward with a vaginal delivery instead of a cesarean section (C-section).

In addition, a doctor who fails to diagnose or treat certain prenatal infections puts a child at risk of developing hydrocephalus.

While hydrocephalus is treatable when diagnosed early, it usually affects children for the rest of their lives and can cause permanent impairments and health complications.

A family who believes their child’s hydrocephalus was caused by a preventable mistake during childbirth might qualify for a birth injury lawsuit.

A birth injury lawsuit allows caregivers to seek compensation for:

  • Assistive devices
  • Medications
  • Physical therapy
  • Speech therapy
  • Surgery
  • Other expenses

Get a free case review to find out whether you can take legal action for your child’s hydrocephalus.

Pediatric hydrocephalus FAQs

How can you tell if your baby has hydrocephalus?

Babies with hydrocephalus often have larger-than-average heads and bulging soft spots. They may seem overly fussy and sleepy and have episodes of vomiting or seizures.

Another sign of hydrocephalus in a baby is a fixed downward gaze known as “setting sun.”

If you are worried that your child may have hydrocephalus, you should seek immediate medical care. Early diagnosis and treatment are critical to a favorable outcome.

What is the most common cause of hydrocephalus in infants?

The most common cause of congenital (at birth) hydrocephalus in a baby is the blockage of a narrow brain channel called the Sylvius aqueduct. The blockage causes excess cerebrospinal fluid (CSF) to collect and put pressure on the brain's tissues.

Acquired hydrocephalus, which develops after birth, can result from a head injury, brain tumor, brain bleed, or infection.

In some cases, hydrocephalus in a newborn is related to medical negligence. For example, a doctor who fails to diagnose a maternal infection puts a baby at risk of hydrocephalus and other health problems. Similarly, an obstetrician who misuses forceps to deliver a baby can cause head trauma that leads to hydrocephalus.

If you suspect a preventable medical error played a role in your child’s hydrocephalus, you may be entitled to financial assistance through a birth injury lawsuit. Reach out to our team members for a free case review.

 

How serious is hydrocephalus in infants?

Hydrocephalus in babies is a rare but serious condition. Left untreated, it can cause children to suffer developmental delays and personality changes. In severe cases, patients can have side effects such as vision loss and nerve damage.

Many have other health problems, such as cerebral palsy, spina bifida, and seizures.

Tragically, half of all children with untreated hydrocephalus die.

However, most infants with hydrocephalus who are diagnosed early and receive prompt treatment grow up to live long and healthy lives.

Can a child outgrow hydrocephalus?

No. Unfortunately, hydrocephalus is a chronic lifelong condition. As a result, a child cannot outgrow hydrocephalus.

The good news is that hydrocephalus in infants can be controlled with surgery or medication when diagnosed and treated early.

How do you prevent hydrocephalus?

Sadly, there is nothing a parent can do to prevent hydrocephalus in a baby.

Mothers can lower the risk of hydrocephalus in a newborn by getting prenatal care while pregnant. A prenatal care provider can check that a mother is vaccinated against illnesses connected to hydrocephalus and treat any infections.

Additionally, mothers who get prenatal care are less likely to go into premature labor. Premature babies face a higher risk of hydrocephalus than full-term babies.

If you have a child with hydrocephalus and plan to have more children, your doctor might recommend genetic testing.

After a baby is born, parents can take steps to prevent head injuries that could potentially lead to hydrocephalus by using car seats, strollers, and other baby equipment that meets safety standards.

Cerebral Palsy Guide was founded upon the goal of educating families about cerebral palsy, raising awareness, and providing support for children, parents, and caregivers affected by the condition. Our easy-to-use website offers simple, straightforward information that provides families with medical and legal solutions. We are devoted to helping parents and children access the tools they need to live a life full of happiness

View 11 references
  1. Boston Children’s Hospital. “What is hydrocephalus?” Retrieved from: https://www.childrenshospital.org/conditions/hydrocephalus. Accessed on November 4, 2022.
  2. Children’s National. “Pediatric Hydrocephalus.” Retrieved from: https://childrensnational.org/visit/conditions-and-treatments/brain--nervous-system/hydrocephalus. Accessed on November 1, 2022.
  3. Hydrocephalus Association. “Hydrocephalus in Infants and Children.” Retrieved from: https://www.hydroassoc.org/hydrocephalus-in-infants-and-children/. Accessed on October 27, 2022.
  4. Hydrocephalus Association. “Hydrocephalus in Pregnancy.” Retrieved from: https://www.hydroassoc.org/hydrocephalus-in-pregnancy/. Accessed on October 27, 2022.
  5. Hydrocephalus Association. “What to Expect with Hydrocephalus Shunt Surgery.” Retrieved from: https://www.hydroassoc.org/hydrocephalus-shunt-surgery/. Accessed on November 4, 2022.
  6. Johns Hopkins Medicine. “Hydrocephalus.” Retrieved from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/hydrocephalus. Accessed on October 27, 2022.
  7. Johns Hopkins Medicine. “Hydrocephalus in Children.” Retrieved from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/hydrocephalus/hydrocephalus-in-children. Accessed on October 27, 2022.
  8. Mayo Clinic. “Hydrocephalus.” Retrieved from: https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604. Accessed on November 2, 2022.
  9. National Institute of Neurological Disorders and Stroke. “Hydrocephalus Fact Sheet.” Retrieved from: https://www.ninds.nih.gov/hydrocephalus-fact-sheet?search-term=Hydrocephalus%20Fact%20Sheet. Accessed on October 27, 2022.
  10. UCLA Health. “Aqueductal Stenosis.” Retrieved from: https://www.uclahealth.org/medical-services/neurosurgery/conditions-treated/aqueductal-stenosis. Accessed on October 27, 2022.
  11. UCLA Health. “Pediatric Neurosurgery FAQs.” Retrieved from: https://www.uclahealth.org/medical-services/pediatric-neurosurgery/conditions-treatment/pediatric-hydrocephalus-program/hydrocephalus-faqs. Accessed on November 1, 2022.