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Periventricular Leukomalacia Life Expectancy

Discovering your child has sustained a birth injury and developed periventricular leukomalacia can be devastating. This injury has no cure, and children with the condition may live from a few months to a full lifetime, depending on the condition’s severity and other factors. The Birth Injury Center provides resources and information, support, and legal resources to those affected by birth injuries. Learn more about periventricular leukomalacia life expectancy and how to give your child the best life possible.

Not many people have heard of or understand periventricular leukomalacia, or PVL. However, this birth injury affects an estimated 20,000 to 30,000 children annually. It typically affects infants born prematurely and weighing less than 3.3 pounds. Of these children, approximately 7,000 annually will develop cerebral palsy. PVL may happen before, during, or after birth.

For parents, periventricular leukomalacia life expectancy is a significant concern. To plan for the care their child will need, they must understand the condition’s nature, how to manage it, and the factors influencing life expectancy and quality of life. In addition, parents may be able to seek compensation to help provide for their children’s needs if the condition results from medical negligence during pregnancy or childbirth. 

At the Birth Injury Center, we can help parents and children understand this diagnosis. Our team will investigate the cause of the injury and determine if legal recourse is possible.

What Is Periventricular Leukomalacia?

Periventricular leukomalacia is a form of brain injury that may occur in premature babies, especially those with a low birth weight of 3.3 pounds or less. It is the second most common complication involving the central nervous system in premature infants.

The condition is caused by an injury to the brain’s white matter. White matter is responsible for transmitting signals between nerve cells and various regions of the brain, playing a crucial role in motor skills, cognition, and sensory perception. The condition results from a lack of oxygen or blood flow to the periventricular area of the brain, leading to softening or “necrosis” of the brain tissue. This area of the brain is fragile and vulnerable to injury, especially before 32 weeks of gestation. 

The more premature a baby is, the higher the risk for PVL. Other factors that may be associated with PVL include:

  •  Bleeding inside the brain (intraventricular hemorrhage)
  • Premature rupture of membraines (amniotic sac)
  • Infection inside the uterus (chorioamnionitis)

What Is the Life Expectancy for Periventricular Leukomalacia?

One of the first things to understand about children with PVL is that their lifespan can range from just a few months to a typical lifetime. Their lifespan and life expectancy depend on the condition’s severity and symptoms, meaning there is no definitive answer. No two children are the same. The injury does not affect them the same way, and their life expectancies can differ significantly.

Symptoms and Diagnosis of PVL

Babies born with PVL usually do not show symptoms or signs for several months. Because of this, the diagnosis may not be made until they are several months old. However, the following are early symptoms parents can watch for: 

  • Vision problems and poor eye control
  • Developmental delays
  • Muscle tightness or contractions, especially in the legs
  • Problems controlling body movements and actions

Sometimes, babies with PVL suffer seizures. The biggest challenge with reaching a diagnosis is that the symptoms of PVL are like those of other birth injuries. 

Doctors typically take cranial ultrasounds to diagnose PVL. The ultrasound shows abnormalities in the brain. Additional diagnostic imaging tests, such as MRIs and CT scans, are used to verify the original test. These tests can also help doctors determine the severity of the condition.

The Severity Level of PVL

Life expectancy for those with PVL depends on the severity of the condition. In mild cases, where the condition has a minimal impact on daily activities and cognitive functions, life expectancy may be similar to that of the general population. However, life expectancy could be shorter in more severe cases, where the condition affects basic life functions such as mobility, communication, and self-care.

Key Factors Influencing Life Expectancy

In evaluating the life expectancy for someone with PVL, you must consider how it affects the ability to live daily life unassisted. 

These are some factors that influence life expectancy:

Severity of Condition

The extent of brain damage caused by PVL is a primary factor in determining its severity. More damage to the brain’s white matter can result in severe motor and cognitive impairments, affecting the quality of life and potentially shortening life expectancy.

Associated Health Conditions

Conditions such as cerebral palsy or epilepsy often accompany PVL and can contribute to its severity. These associated health conditions can compound the challenges faced by the individual and affect life expectancy. For instance, severe epilepsy can increase the risk of life-threatening seizures, impacting life expectancy.

Quality of Medical Care

Early diagnosis and intervention can significantly affect the severity of PVL and its long-term impact. With the right medical treatment, medication, and surgical interventions, the symptoms and complications can be managed more effectively, possibly leading to improved life expectancy. However, there is no cure for this condition.

Family Support and Environment

A supportive family environment can make a considerable difference in managing PVL. Emotional and physical support can improve the individual’s ability to cope with the condition’s challenges. A nurturing environment may not alter the structural brain damage, but it can improve quality of life and positively affect life expectancy.

Ongoing Rehabilitation

Consistent rehabilitation efforts, including physical, occupational, and speech therapy, can help individuals with PVL improve their functional abilities. Improved function can lead to better self-care and independence, reducing the severity of the condition’s impact on daily life and positively affecting life expectancy.

The Importance of Individual Assessment

Because periventricular leukomalacia life expectancy varies widely among individuals, an in-depth assessment by health care professionals is important. Such evaluations can provide families with a more specific prognosis and individualized care plans, considering the unique needs and potential of the affected child. Never compare your child with PVL to another. While they may have the same diagnosis, this is usually where the similarities end. There is no specific treatment for PVL. Treatment is tailored to the individual and supportive.

How To Take Care of a Child With Periventricular Leukomalacia

Caring for a child with PVL requires a comprehensive understanding of the condition. While medical intervention is part of the care process, parents and other caregivers must meet the child’s daily needs and watch for ongoing or worsening symptoms. 

The following are some things to consider:

Monitor Symptoms

Caregivers must monitor any changes in symptom development. If you notice new or worsening symptoms, notify your child’s doctor. When you notice changes, it is necessary to address them to continue managing the child’s condition.

Routine Evaluations

Regular assessments by developmental specialists can provide insights into your child’s progress and needs. These evaluations include motor skills testing, cognitive assessments, and language development checks. Regular check-ups allow health care providers to update the treatment plan as necessary, ensuring your child receives the type and level of care they need.

Medical Team Coordination

Effective care for a child with PVL often involves a team of health care professionals, including pediatricians, neurologists, therapists, and sometimes even surgeons. All medical team members must be in sync regarding the treatment plan, medication, and any other interventions. Coordination ensures that your child receives comprehensive care, which can effectively manage the condition’s severity and impact.

Getting Help for Periventricular Leukomalacia Due to Medical Negligence

Sometimes, PVL results from medical negligence or improper procedures during childbirth. If you suspect that your child’s condition was preventable, it’s crucial to consult with medical malpractice lawyers. Pursuing compensation could help cover medical bills, ongoing therapies, and special equipment, such as wheelchairs, which are essential for improving your child’s quality of life.

By understanding PVL, knowing the factors affecting life expectancy, and taking appropriate care measures, families can help children with PVL lead as fulfilling a life as possible. While each case is unique, early diagnosis, intervention, and a supportive environment can make a substantial difference in managing this challenging condition.

At the Birth Injury Center, we provide resources and help if your child has suffered any birth injury. Our legal team can review the facts of your case and help determine whether you have grounds to pursue compensation. Contact us today to learn more.

Written by:
Birth Injury Center Team

The Birth Injury Center aims to create informational web content and guides to help women and their families seeking support and guidance for birth injuries caused by medical negligence. All of the content published across The Birth Injury Center website has been thoroughly investigated and approved by medical expert Natalie Speer, RNC-OB, Attorney Ryan Mahoney, and Attorney Rick Meadows.