Periventricular leukomalacia (PVL) is a type of brain injury that involves the periventricular white matter of the brain. Damage to the white matter results in the death and decay of injured cells, leaving empty areas in the brain – called lateral ventricles, which fill with fluid (a condition called leukomalacia). 

     Conner received his PVL diagnosis very early on in the NICU after a brain ultrasound. It was a hard thing for us to accept and instilled a deep sense of worry for his future. I often struggle with that diagnosis the most because it is most likely the root of Conner’s cortical visual impairment (CVI), infantile spasms/epilepsy and cerebral palsy. It was always a concern for us from day one, but it was often overshadowed by fear for Conner’s life on far too many days. It is now a part of our life and something we are learning to take in stride as it is something that can’t change or be treated. However, we can improve his CVI, continue to do everything possible to keep control of his epilepsy and seek all kinds of treatments for Conner’s cerebral palsy.