Periventricular Leukomalacia (PVL)

What is periventricular leukomalacia (PVL)?

Periventricular leukomalacia (PVL) is damage to the inner part (white matter) of a baby’s brain. White matter is made up of the “wires” that neurons (brain cells) use to communicate with other parts of your brain and spinal cord.

If your baby has periventricular leukomalacia, there’s damage to some part of their white matter. This may lead to motor (movement) and cognitive (mental) developmental delays. They’ll also have a higher risk of cerebral palsy.

It may help to break down the condition’s name to better understand it:

• Peri means surrounding or around.
• Ventricular refers to ventricles, which are spaces in your brain that contain fluid.
• Leuko means white. This refers to your brain’s white matter.
• Malacia is an abnormal softening of tissue that healthcare providers can see when the tissue is damaged.

In other words, periventricular leukomalacia is the softening (damage) of white matter around the ventricles in your baby’s brain.

Babies born before 32 weeks’ gestation (very preterm) are most at risk for developing PVL. The younger their gestational age (or the more pre-term they’re born), the greater the risk.

If you had a preterm delivery, your mind may be spinning with questions and concerns about your baby’s health and future. Know that your baby’s healthcare team will help you understand how this condition may affect your baby — and family — and offer guidance and support.

Symptoms of PVL

You generally can’t tell that a baby has periventricular leukomalacia by looking at them — there may not be any physical signs. But over time, they may develop any of the following due to PVL:

• Motor (movement) delays, like issues with sitting, crawling, walking and moving their arms
• Cognitive delays (intellectual disability)
• Coordination issues
• Vision and hearing issues
• Spastic quadriplegia or diplegia (muscle tightness affecting all their limbs or just their legs) — this can be a feature of cerebral palsy

These conditions typically appear by age 2. PVL affects every baby differently.

Periventricular leukomalacia causes

PVL occurs when not enough blood or oxygen gets to your baby’s brain, either before or after they’re born. Babies born preterm or small for their gestational age are most at risk. This is because their brains are still developing and may be more likely to be injured.

Other conditions linked to PVL include:

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

How doctors diagnose PVL

If your baby is born preterm, their healthcare team may recommend screening tests in their first several days and weeks. In other cases, your baby may not receive testing for the condition until they show signs of it, like developmental delays.

Tests that can diagnose PVL include:

• Brain MRI. An MRI scan produces detailed images of your baby’s brain. It can show patterns of white matter damage that are consistent with the condition.
• Head ultrasound. Ultrasound uses sound waves to make images of body tissues. If your baby has PVL, the ultrasound will show changes in the white matter in their brain tissue.

What is the treatment for PVL?

There isn’t a direct treatment or cure for periventricular leukomalacia. Brain damage from PVL is permanent. But several therapies can help manage symptoms and improve your child’s quality of life. These therapies may include:

• Physical therapy. This can help your child improve their movements. This includes their fine motor skills (like drawing and tying shoelaces) and gross motor skills (like sitting and running).
• Occupational therapy. This can help your child learn new ways of doing everyday tasks to increase their independence (like using utensils to eat).
• Speech therapy. This can help your child if they have difficulties speaking and/or communicating.
• Assistive devices. Devices like wheelchairs, walkers and canes can help increase mobility.
• Medications. Certain medications may help manage symptoms like muscle spasticity (muscle tightness) or any other conditions your child may develop.
• Social work and educational support. Your child may need additional support with school or other aspects of their everyday life. Social workers, education specialists and other experts can offer supportive care and services that can help.

Can I prevent periventricular leukomalacia?

There’s nothing you can directly do to prevent periventricular leukomalacia. The main goal is to try to prevent preterm birth. If you’re at risk for having your baby preterm, going to a medical facility that specializes in preterm delivery may help prevent this condition.

You can’t always prevent preterm delivery, but taking the following steps during pregnancy can help reduce your risk:

• See your healthcare provider regularly for prenatal care.
• Manage any health conditions you have, like diabetes, high blood pressure or depression.
• Don’t smoke, drink alcohol or use substances.
• Eat nutritious foods.
• Gain a healthy amount of weight during pregnancy.
• Protect yourself from infections that can harm you and/or the fetus.
• Manage stress.

What can I expect if my child has PVL?

No two children with periventricular leukomalacia are affected in the same way. The prognosis (outlook) depends on several factors, like the severity of the brain damage and any other health conditions your child may have.

Some children have minimal to no symptoms, while others face significant physical and/or intellectual disabilities. Your providers should be able to give you a sense of the severity of the injury that your baby has and how this may affect their development.

It’s impossible to predict how your baby will be affected. The best way you can prepare is to talk to healthcare providers who specialize in researching and treating PVL. As they grow, your child may benefit from a team of specialists who can care for their needs.

What is the life expectancy for someone with periventricular leukomalacia?

Most babies with periventricular leukomalacia can expect to live a full lifespan. If your baby has severe brain damage or other associated medical conditions, then they may have a shorter life expectancy. Factors that may affect their lifespan include:

• Feeding difficulties
• Lack of movement or mobility issues
• Breathing (respiratory) difficulties