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Periventricular Leukomalacia (PVL)

By Cynthia Bissell

Happy and healthy two-year-old Eric (a  former 26-weeker) with PVL and cerebral palsy loves to meet people.
Happy and healthy two-year-old Eric (a former 26-weeker) with PVL and cerebral palsy loves to meet people.

Periventricular leukomalacia . . . even in my nursing career, I had never heard of this diagnosis. I only knew it didn’t sound good. When I asked Eric’s neonatologist what this meant, he answered simply, “Cerebral palsy.”

Eric and his identical twin brother, Aaron, were born on July 28, 1993, at 26 weeks gestation. Both had many of the common complications of prematurity. Eric’s most serious complication was and is periventricular leukomalacia, or PVL.

When I first learned of Eric’s condition, I attempted to find out everything there was to know about the subject. I wanted an exact portrait of how this diagnosis would affect my son. I quickly learned a lesson that all families raising a child with a disability learn—there are no clearly defined borders in relation to outcome. We only knew that Eric was at high risk for cerebral palsy.

But what did that mean? Would he walk with a limp? Would he be severely disabled? My spirit grieved for Eric and my mind created negative caricatures of Eric’s future. Not knowing exactly what I was grieving for made it all the worse. Seeing a person in a wheelchair affirmed my worst fears. Seeing a typical child running and playing outside gave me a glimpse of what Eric had lost. As I looked upon this beautiful, tiny baby it seemed impossible that his brain was not perfect. I cried for what Eric had lost at such a young age. I also wept for the loss of Eric as I had imagined he would be. In many ways, the unknown was the hardest part of Eric’s diagnosis of PVL.

Children come into this world innocent, carefree, and full of life. At least that is how it’s supposed to be. What possibly could have gone so wrong that my child would never have the same advantages as typical children? Questions such as this constantly went through my mind. I struggled with feelings of guilt, sadness, anger, and jealousy. Guilt for maybe having done something that caused the twins to be born too soon. Sadness at the loss of the usual joys of pregnancy, childbirth, and twins. Anger because this happened to our family and jealousy toward people with “normal” children.

Now that Eric has actually been diagnosed with cerebral palsy, I am slowly gaining insights into his full potential. At least I can begin to cope. I try not to mourn what was lost, but accept and acknowledge what has been found. I realize that although things could have turned out better, they could also be much worse.

I am thankful for Eric and his brother. Eric has an infectious smile and a belly laugh that is contagious. He has brought tremendous joy into our lives and into the lives around him. He has taught me patience and to take nothing for granted. He has taught me what is truly important in life. When I first learned of his diagnosis, all I could think about was his disability. Now I see that he is “Eric,” a child similar in most ways to any other child. His disability is only a small part of who he is.

CINDY, MOTHER OF 26-WEEKER ERIC, TWIN TO AARON

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Your Premature Baby and Child," Helpful Answers and Advice for Parents, by Amy E. Tracy and Dianne I Maroney, R.N.
Your Premature Baby and Child,” Helpful Answers and Advice for Parents, by Amy E. Tracy and Dianne I Maroney, R.N.

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