Tell me about your IVH experience

New Wife

We just found out that our little man has a grade 2 on the right and grade 3 on the left. The doctors and nurses cant say "with certainty" what this will mean for him later on and all though I have read a lot about them I wanted to hear your stories.....I want some hope but not if there shouldnt be any I want to be sure I know what this all means in the preemie world!

SBMBride406

Hi there! Marino had a Level 1 IVH, which I realize is less severe, but I will share our experience with you. The drs found it right as he was leaving the NICU (it wasn't there on his first head u/s) and then 10 days later he had bacterial meningitis so they were pretty worried about his brain. For 6 months we just kept an eye on him for signs of asymmetry, and around 9 months we had a f/u u/s which showed it had resolved. They didn't want to do an MRI until he was 15 months b/c they didn't think it was worth the risk of putting him to sleep.

Again, a Level 1 is the least severe and generally resolves on its own, so I don't know if that helps ease your mind. Marino is very healthy and right on track developmentally now.

Let me know if you have other questions.

lemen99

our little boy had a grade 2 and a (small) grade 4 on the other side.  So far, we don't know of any delays but wont probably know until he's older.  they told us most likely any effect will be small / minor (trouble with eye / hand coordination, ADD, etc.), but we just don't know!

 

lemen99

p.s. You probably know, but level 4 is the worst

mnberry18

my son has a grade 1 on th eleft and a 4 on the right. they have both been resolving since they were found. aaron ended up with post-hemorrhagic hydrocephalus because a clot from the resolving bleed on the right seemed to have been clogging up the drainage. the doctors were concerned he'd need a shunt if it kept getting worse. fortuanately the clot has started to break up and the hydrocephalus is staying stable/resolving as well!