My daughter has a condition known as periventricular leukomalacia, which is a thinning of the white matter of the brain. She has a speech delay and developmental delays, but we want to know more about this condition. Any help would be greatly appreciated. We won't be having a consultation with her doctor for another month, and we have too many questions to wait until then.Question:
Periventricular leukomalacia is a long, difficult-to-pronounce couple of words that describe an injury to the brain that most often affects babies who are born prematurely -- although infants born at term may acquire this as well. Breaking the words down into their basic parts gives a little insight into this diagnosis. The ventricles are normal spaces within the brain that are filled with fluid. "Peri" means around. So, the first word describes a location, namely the area around the lateral ventricles, which are the largest fluid filled spaces of the brain. "Leuko" means white, and "malacia" means soft. Therefore, periventricular leukomalacia (PVL) refers to softening of the white matter of the brain located next to the lateral ventricles.
This softening represents injury to the brain tissue, usually due to lack of oxygen or blood flow to this area of the brain. This poor blood flow may occur prior to delivery, during delivery, or after delivery. Determining when exactly the lack of blood flow occurred is usually impossible. However, the bleeding within the ventricles, which may occur in babies born very prematurely, clearly puts the area around the ventricles at risk for PVL. Unfortunately, there is no effective treatment for PVL. Therefore, most research is directed toward prevention. But even in this arena, there are still no absolutely effective measures to prevent PVL other than preventing premature births.
The periventricular area of the brain primarily contains fibers that control motor functions although there are certainly other functions that reside in this section as well. Therefore, children who develop PVL are at high risk for developmental delays and motor difficulties. PVL remains a major factor in causing cerebral palsy. However, it is impossible to predict what a child will and won't be able to do based upon the extent of PVL. This is why careful developmental follow-up of these children is so crucial.
Children with PVL have different outcomes and manifest their delays at different times and with different severity. With all this uncertainty, I can surely understand your concern to get as much information as possible. And I commend you. The most important thing you can do is interact with your daughter in the loving way. Also, find out what resources your state has for children with speech and developmental delay. Your daughter may be eligible for early intervention from the schools. Finally, you may find additional information and support at The PVL Resource Center.Answer: