Hi all!
I am new to this board, and just wanted to know if anyone had good info for me on ACC (Agenesis of the Corpus Callosum)? I am 35 weeks pregnant with our first LO and found out yesterday that he/she has ACC and mild hydrocephalus. (And is also 3 weeks underweight at this point). Any advice or information would be so helpful! Thanks!
Re: Any info on ACC??
WOW! It sees like we get one of these questions every other week now.
Yes, DS has partial ACC he is missing the rostrum, splenium and the posterior part of the body. His P-Acc was caused by micro-deletions on his chromosome #1 which were not detected in the CVS. There are about 5-6 other Mommies on here who have complete ACC and couple with thin ACC.
The key is not to google. The prognosis is soooo different for each child and since you are automatically qualified for early intervention services, it can help with some of the develpomental delays(if any)
We did not know before Nate was born. He was a bit small at birth 5lbs 9oz at 39 weeks and had to be in NICU for intitally some breathing issues and then they kept him because he had a weak suck. NICU sucked big time, but there were so many babies there a lot worse off.
Here are a couple of links for you......
https://scenicbeauty.tripod.com/AngelsAroundTheWorld.html
https://agenesiscorpuscallosum.blogspot.com/
I also suggest getting on the listserve hosted by University of Maine. Rememeber though when you read posts and stories parents post, that a lot of the children have other stuff going on besides ACC.
Welcome to the club! (No one else wanted to join either) {{{hugs}}}
Yep, we are here with ya! DD has c-Acc Assem. mentioned a lot of great points. Don't google. Don't even worry too much if your child has p-acc or c-acc as it really doesn't matter. The bottom line is that YOUR child is going to develop in his/her own way.
Since you have a little time and things might get fast when your child is born, here are some things you can be prepared for.
There are more and more of us on the board with acc kids.
After 1 MC 2007, 2 CP, Cade Anthony is here:
Photography Blog Our Family Blog
Thanks for the reply, Carri! We have been informed by our doctor that baby will be here on Friday or Monday (depending on how the next 2 BPP and AST's go) because he/she isn't growing anymore. (We were at 3lb,14oz as of last Friday at 35 & 1/2 weeks). So we will see soon how our precious bundle is doing!
We are so excited to meet this LO, and are hoping that being out of the womb will help with growth and development. God IS good!