|advice from the preemie-l discussion board http://home.vicnet.net.au/~garyh/preemie_forum|
"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
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."
"My daughter, 28 wkr, also has PVL. She is 4 yo now and I still worry of the
consequences of this damage.
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.
|Page 8 back to index go to next page|