Anyone have experience with Vein of Galen Malformation?

[AprilM]

I hope this is the right place to post this, I couldn't figure out exactly where this went. Mods, feel free to move. My cousin just had a baby on Wednesday. Her pregnancy was normal, all ultrasounds were normal and she was over due so her OB wanted to induce. She went in for the induction, they did one last ultrasound to check fluid levels and they saw what they thought was a brain aneurysm. 

After rushing her up to the city for an emergency C Section, and doing some more testing on the baby (poor thing had scans and an  MRI under GA) they realized what they were seeing wasn't a brain bleed but an abnormal bunch of blood vessels they are calling the Vein of Galen Malformation. 

The baby's heart is currently enlarged, and pumping too hard so they need to figure out something fast. From what I read on this particular condition, this could be a very dangerous situation. 

Any mamas out there BTDT with their babies? My heart is just breaking for my cousin and her boyfriend and we are really praying hard for little Liam. 

Any more info on this would be great. What does this baby have to look forward to?

[beachcomber]

Oh dear, :( No experience with this but I wanted to send your cousin and her boyfriend and their little baby my thoughts.

[AprilM]

My cousin's baby actually passed away last night. He went into heart failure and they couldn't stabilize him long enough to do his first surgery. :-( What a horrible birth defect. 

[beachcomber]

My googling indicates that surgery, monitoring and anti-seizure meds are the typical route of management. Here's a great support site: http://veinofgalen.wordpress.com/