Periventricular leukomalacia (PVL) is a form of brain damage that affects the white matter of brain, resulting in the cells in the white matter of brain either decaying or dying. In turn, an area of the brain is left empty, resulting in fluid buildup. It’s estimated that around 60-100% of all children who have PVL will also develop cerebral palsy (CP). In most cases, spastic diplegia is the most typical type of CP that develops due to PVL. Although uncommon, quadriplegia CP may also develop.
Cell damage to the brain’s periventricular tissue as well as a decrease in blood flow are the two primary reasons that PVL occurs. In addition, babies born prematurely, especially before 32 weeks gestation, have a heightened risk of PVL. Unfortunately, premature infants are also at the highest risk of death should they develop PVL.
A host of other conditions can cause PVL, including:
- Having twins
- Umbilical cord inflammation
- Antepartum hemorrhage
- Problems with the placental blood vessel
- Sepsis and other illnesses in which bacteria enters the bloodstream
- Lack of oxygen to the periventricular area of the infant’s brain
Signs and Symptoms of PVL
Unfortunately, PVL is extremely difficult to detect, especially in newborns and infants under 6 months of age. Since PVL mimics so many other medical conditions and most infants show no outward signs of impairment, it may take months or even years before a formal diagnosis is made. However, there are certain signs and symptoms to look out for, including:
- Difficulties with coordination
- Intellectual and cognitive impairment
- Vision problems
- Hearing impairment
Treatment for PVL
If PVL is suspected, your child may need to undergo a series of development assessments in order to get an accurate diagnosis, as well as a cranial ultrasound, which is usually reserved until the infant is at least over 6 months of age, as performing an ultrasound too early may not detect PVL. Treatment will then depend upon the severity of the disorder, but typically includes a series of therapy plans, including physical, massage, and speech. If vision is impaired, your physician may recommended corrective vision treatment.
Prognosis greatly depends upon the severity of the disease. While some children will have relatively minor problems, others may have severe disabilities and deficits for life. The best course of action is to ensure you and your physician find and carry out the best treatment plan for your child’s situation.
Current Research on PVL
In an ongoing effort to understand more about PVL and other types of beneficial treatments, the National Institute of Neurological Disorders (NIH) and Stroke conduct regular research on PVL as well as other brain injury disorders. NIH offers clinics and clinical trials across the nation. Furthermore, organizations such as the National Organization for Rare Disorders help research and study PVL in an attempt to treat and help find a cure. For more information or to get involved, contact the organization directly at 888-999-NORD.