Hydrocephalus

jdiaz79

Good evening. My son just received a "preliminary" diagnosis of hydrocephalus. I say "preliminary" b/c we have only had 2 u/s. He was born at 35.5 / 36 weeks due to pre-e/HELLP. U/s show mild dilation of ventricles with 9-10 mls of fluid; no focal abnormality / mass. Is there anyone out there dealing with this? I am overwhelmed to say the least. We have had many, many issues to date, but this is the scariest dx yet...

lacey_ja_r

Please know that in the grand scheme of things...this dx is doable. I have learned that through my own experience with one bad dx after another. This one could be fixed through a shunt if it does keep growing.  But if it doesn't then if I remember correctly 9-10mls may not have any effect on your LO at all. 

DS has enlarged ventricles (dx before birth) but was never dx hydrocephalus.  His ventricles have stayed stable since birth they are at around 17 and 22mls.  He isn't dx Hydrocephalus because his are caused from his Lissencephaly.

Here is a link to a forum that really helped to educate me during our first weeks with this dx.

https://www.i-am-pregnant.com/encyclopedia/V/Ventriculomegaly/

jdiaz79

Thank you for the response. I am following up with a neurologist tomorrow. I am going to check out the forum as well.

SJC1984

My son has hydrocephalus, (from a mass on his brain) and is shunted.  It's scary, but it's definitely something treatable in today's times!  Good luck meeting with the neurologist.  If you have to have shunts, I suggest a *pediatric* neurosurgeon.  A lot of people will put shunts in babies even if their field isn't normally pediatrics... Something to think about.