Jouberts syndrome

[danissa, LPN, LVN]

Has anyone nursed, or known anyone with Jouberts Syndrome?? Our friends have a baby with this syndrome, in fact I nursed her in our NICU.

I know it's rare, just wonderin if any of you guys have come across it, and how the kiddos turned out?

[rn/writer, RN]

Don't have any personal experience with this condition, but here is a link you can check out:

http://www.ninds.nih.gov/disorders/joubert/joubert.htm

What jumped out at me from this page is the line that said prognosis is very much dependent on whether the cerebellar vermis is partially developed or missing altogther. Do you know this baby's status?

I wish your friends and their child the best possible outcome.