Periventricular Leukomalacia (PVL)

What is periventricular leukomalacia?

Periventricular leukomalacia (PVL) is a kind of brain damage that occurs to the inner part of your brain (white matter). PVL may happen before, during or after birth.

White matter exists around the spaces in your brain that contain fluid (ventricles). Your white matter sends information among your nerve cells, spinal cord and other parts of your brain. Injury or death of this brain tissue affects the nerve cells that control your movement.

Periventricular leukomalacia symptoms can range from mild to life-limiting. Most often, PVL leads to tight (spastic) muscles. PVL also increases the risk of cerebral palsy, learning disabilities and other problems with development.

Who might get periventricular leukomalacia?

Anyone might get PVL. But it’s more common in children who’re born prematurely and have a low weight at birth. The more premature your child is, the higher the risk.

How common is periventricular leukomalacia?

Each year, periventricular leukomalacia affects about 20,000 to 30,000 children born prematurely who weigh less than 3.3 pounds. About 7,000 of these children develop cerebral palsy.

What causes periventricular leukomalacia (PVL)?

The cause of periventricular leukomalacia isn’t clear. PVL may occur when not enough blood or oxygen gets to your child’s brain. Other conditions linked to PVL include:

• Brain bleed (intraventricular hemorrhage).
• Early water breaking or bursting of your membranes (amniotic sac).
• Infection in your uterus.

What are the symptoms of periventricular leukomalacia (PVL)?

In mild cases, some babies may not have any symptoms. Sometimes, symptoms appear gradually over time. The most common PVL symptoms appear by six to nine months of age and may include:

• Developmental delay (mental and physical).
• Difficulty with eye movements.
• Hearing loss and vision problems.
• Learning disabilities.
• Movement issues.
• Scoliosis.
• Seizures (epilepsy).
• Tight muscles, especially in their legs (spasticity).
• Urinary incontinence.

How is periventricular leukomalacia diagnosed?

Your healthcare provider will ask about your child’s symptoms and health history. They’ll also give your child a physical exam. They may suggest other tests as well, including:

• Magnetic resonance imaging (MRI): An MRI uses radio waves, a magnet and a computer to take images inside of their body. This imaging test can show changes in your child’s brain tissue.
• Head ultrasound: Ultrasound uses sound waves to make images of body tissues. If your child has PVL, the ultrasound will show cysts or hollow places in their brain tissue. Healthcare providers usually do a cranial ultrasound four to six weeks after birth.

How is periventricular leukomalacia (PVL) treated?

There isn’t a cure for PVL. Treatments focus on minimizing symptoms and improving quality of life. These treatments may include:

• Assistive devices, such as wheelchairs, walkers and canes.
• Medications.
• Occupational therapy.
• Physical therapy.
• Speech therapy.

How can I reduce my child’s risk of periventricular leukomalacia?

You can’t reduce your child’s risk of PVL. But you can help improve your child’s quality of life by seeking treatment as soon as symptoms appear.

What can I expect if my child has periventricular leukomalacia?

Periventricular leukomalacia can lead to physical and mental development issues. Severe cases of PVL can cause cerebral palsy. Your child’s healthcare provider will need to monitor them over time for any changes to their condition.

What is the outlook if my child has periventricular leukomalacia?

Children with PVL may live from a few months to a full lifetime. Their lifespan depends on the amount and severity of their symptoms, such as:

• Ability to feed themselves.
• Ability to move.
• Breathing (respiratory) functioning.
• Mental (cognitive) abilities.

How do I take care of my child with periventricular leukomalacia?

You can take care of your child with PVL by making sure they receive regular evaluations by a developmental specialist. If the specialist finds any issues, they can find ways to help as soon as possible.

When should I contact my child’s healthcare provider?

You should contact your child’s healthcare provider if you notice:

• Any new symptoms.
• Changes in their symptoms.