Two Week Wait

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Hydracephalus & Agenesis of the Corpus Callosum (ACC)

Wed May 21, 2008 2:33 pm

Mild hydracephalus (1.3 cm on both sides of the brain @ 25 weeks) & Agenesis of the Corpus Callosum (ACC).

Anybody had this diagnosis? How about AFTER a Choroid Plexus Cyst diagnosis found at the 18 week or so abnormality scan & with follow-up scan 6 weeks later, found the hydracephalus?

I'm having a Fetal MRI on Friday, May 23rd & then, Genetic Counseling on Tuesday, May 27th for this disorder & an amnio on Wednesday, May 28th. Hopefully, we can rule out Trisomy 18 or Trisomy 8 with the amnio although, my blood work came back LOW risk for the Trisomies otherwise, we'd have had the amnio loooooong ago.

I guess I'm just looking for somebody with some input, thoughts, experiences, etc. Thanks!! ;o)

Thu May 22, 2008 6:07 pm

WOW Salt! 8O That makes my head spin. I don't have any answers for you, put I wanted to wish you luck tomorrow with the MRI. I hope you get some answers. You're in my thoughts.

Thu May 22, 2008 7:13 pm

The only thing I know about ACC is Kim Peek has it.......Kim Peek was the guy who the movie Rainman was based on.....

Good luck with the MRI.....I'll keep you and your baby in my prayers....

Mon May 26, 2008 9:06 am

Hydrocephalus can be corrected with a shunt. My daughter had one inserted when she was three days old. I'm not familiar with ACC, but I know what it's like to have your world fall through the floor at around 20 weeks. We found out our daughter had Spina Bifida on the 22 week u/s and it's so hard to wrap your brain around.

Sasha is here now and nearly 2 weeks old. She's perfect. She's had two surgeries (one to close her back and one to insert her shunt). She was never truly hydrocephalic, but kids with SB almost always need help draining away spinal fluid form their brain.

Please keep us posted. You're in my prayers.

Thu May 29, 2008 6:36 am

So, the MRI found "complete" ACC (means COMPLETE absence of the Corpus Callosum), the hydrocephalus is still there and the Doc clarified that it's Ventriculomegaly (and ours is a mild form of hydro caused by the ACC--in not blocked & it's not isolated... I'm still confused, but she doesn't seem worried much about the hydrocephalus, which I *thought* was a more devastating condition than the ACC).

I had an amnio yesterday & an Fetal Echo Cardiogram on the baby's heart--no heart defects detected as of yet. She had a hard time getting good images because of the baby's position. About the amnio, we're hoping for results on Friday & if not, Monday--it's a VERY creepy feeling to have the amnio done, but the needle is soooo thin & it didn't hurt and I had no anesthetic. Our Doc is setting us up with a Pediatric Neurologist to discuss possible scenarios for an outcome with our baby's particular symptoms.

So, that's where were at... kind of the same as we were the day we found the baby had ACC, but I've got a few tests behind me, some more knowledge, done some crying (I don't cry so much anymore) and I just knew it, just needed some time needed to pass to absorb all this. Just as long as the amnio doesn't come back with a fatal genetic disorder (which will be VERY devastating), I should just keep truckin' along & just get as much info as I can before the baby's born. ;o)

Fri May 30, 2008 2:07 pm

Just wanted to offer more :hugs: and support.

The ACC is such a question mark cause it seems to have different degrees and there is no real way to know how she'll be affected. I am sure you have already realized that from all your studies thus far.

The hydrocephalus is usually a symptom or side effect of something else (like maybe the ACC?) other than a stand alone condition. I am glad it is just mild, maybe it will resolve itself without needing treatment.

I guess you haven't heard anything yet? I was hoping you wouldn't have to wait the weekend. :( Hang in there girl. :hugs:

Fri May 30, 2008 2:12 pm

I saw some activity on this post and hoped maybe you got the results of the amnio. Kind of been stalking you, sorry bout that!! I really hope you don't have to go through the weekend with no answers. I'll be thinking about you and sending prayers your way!

Fri May 30, 2008 3:11 pm

Salt - just wanted to let you know I'm thinking of you. :hugs:

Fri May 30, 2008 4:34 pm

I was glad to see an update. Great news about the heart. Sometimes I think I don't know how I'm going to manage with Wade, but God truly doesn't give us more than we can handle. I'm so glad you're feeling a little better emotionally. Time certainly helps heal. I hope your amnio comes back with great results and answers for you.

Sun Jun 01, 2008 12:51 pm

*hugs* I hope they don't make you wait too much longer for the results.
Thinking of you and your LO

Sun Apr 29, 2012 6:54 pm

WOW I know this is a very OLD post but I was wondering (if you are still around TWW) how your child was doing?

My 1st daughter also had a completely missing corpus callosum (ACC) and fluid filled ventricles(sp?). She also had a heart defect and severe IUGR along with a 2 vessel cord. She was born at 28 weeks and lived for 4 months almost.

Tue May 08, 2012 6:28 am

My son was also diagnosed with ventriculomegaly at 28 weeks. I cried a lot as well. We had a follow up scan a month later and it had resolved. I just wonder how you are doing, I remember how scared I was for my baby. Like yourself I was just hoping that it was not a fatal syndrome.

Liz

Re: Hydracephalus & Agenesis of the Corpus Callosum (ACC)

Fri Aug 16, 2013 8:00 pm

I also was looking for an update. My son passed away at ten days with VACTRL with hydrocephalus June 2012. The pain is still so deep to this day.
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