Topics Discussed This Month
PVL...
advice from the preemie-l discussion board       http://home.vicnet.net.au/~garyh/preemie_forum
Linda asks, "My son Matthew was a 29 weeker now 7 months old... To my horror 2 days before his discharge they do a head ultrasound and find PVL [periventricular leukomalecia]. My whole wold crashed. All I could imagine was my son being physically handicapped and mentally retarded.
Basically PVL was a technical term for brain damage. Matthews corrected age now, is 5 mos.   He is unable to roll over and this scares the life out of me. He really tries though by lifting his butt up when on his stomach. It seems like he's eventually do it but I don't know when. He lifts his head and holds it rather well, and he's got and iron grip. He really smiles and laughs now especially at me and my husband. He is not yet reaching for things, though he is slowly beginning to hold them in this hand and attempt to bring it to his mouth. Gross motor and fine motor skill really concern me as well as what he will be like mentally?
Does anyone have any similar experiences or know of any developmental outcomes of something like this? Any info would really help me. Sometimes my heartache is unbearable and there seems to be no end to my tears."

Kathie answers,  "My daughter, 28 wkr, also has PVL. She is 4 yo now and I still worry of the consequences of this damage.
She actually did very well developmentally at first and I thought we were going to unscathed from the incident. But between the ages of 2 and 3, where other kids were growing in leaps and bounds, Alex progressed in only small steps.
By 3 yo she was delayed almost a year in some areas and that is when we started early intervention.
Today at 4 yo she has some skills of a 6 yo and others of a 2yo. Most of her delays though tend to be in the motor skill area. For her cognitive skills, she has the vocabulary of a 6 yo, but is unable to use the "big" words properly, hence some of her speaking skills are at the 2-3 yo level. She also has a photographic memory that she uses to her advantage, and compensates for her lack of attention at tasks. It is quite amazing how the mind works and how some areas can be refined to compensate for the damaged areas. Kind of like how a blind person has enhanced hearing or sensory perception."

Kateri relates, "You could be telling my son's story! When Keegan was 2 days old, the neo told me that he had "spots" on his brain, but couldn't tell me anything, outcome-wise. He said that it looked like he'd had a stroke before he was born. He also ended up with a level ll bleed. After his discharge from the NICU we took him to a neurologist for a developmental checkup. She ordered an MRI and a few days after Christmas (last year) broke the news to us that not only did Keegan have PVL, but he also had Cerebral Palsy. Talk about devastated. All I could think of was my precious son being in a wheelchair and worse. We started PT and worked so hard with him. Keegan's daycare teachers did his exercises throughout the day. We also did them at home. His older sister (6 y.o.) also helped and almost ripped his legs off a few times! eek. Basically we stretched his muscles because they were so tight. From what we were told by the neuro, if we broke him of his muscle-tightening and fist-making then, he could start developing normally and these things wouldn't become normal for him. At that time, his muscles were so tight and he always had his hands in fists. We saw the PT every week for 2 months and the progress was amazing. He developed 6 months in those 2 months, which brought him almost up to speed. Because we got rid of his stiffness, he took over and started developing at an amazing rate! He still clenches his fists when his balance is compromised, but that is normal according to his PT.
Keegan will be 2 next month. He sat up at 9 months and started walking at 15 months. No one but his neurologist can tell that he has CP. She is so astounded and amazed at his progress. We'll be seeing her in June for a follow-up and she said that she won't have to see him anymore after that.
Keegan is a little small for his chronological age, but is catching up. He's such a normal toddler boy that he amazes me! He runs and jumps on everything, he climbs, he dances, he sings and yells and copies everything that his beloved sister does. He's normal! Two years ago, even 18 months ago when I was in the depths of despair, I would not have ever thought that would be true.
My advice to you would be to get a developmental checkup or early intervention visit for Matthew. My neurologist told me that they can do amazing things for kids with CP or PVL if they catch it before they turn 1. I know how you're feeling. I got tons of information and got help for my son and it worked wonders. Baby's brains are amazing things, they can recover from things that an adult would be so damaged from."
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