Special Needs

Any info on ACC??

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......

    http://scenicbeauty.tripod.com/AngelsAroundTheWorld.html

    http://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}}}

    WAY 2 Cool 4 School
    photo 4dce26cd-2fbe-4296-9bd4-89e87890c303.jpg

    image
  • 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.

    1. See if you can find a pedi with experience with ACC kids.  This is probably the most important doctor in your child's life as he/she will see your child the most.  Meet with him/her before baby is born.  Trust me on this one.  If something unexpected happens while you are still in the hospital you have already have a relationship.  For example, DD would not suck and aspirated badly once in the hospital.  They put her in the NICU and notified our pedi.  He knew we would be upset so he came down after work to check in on us and our child.  He has called us up after he received specialist reports to talk to us about them.  He is amazing. 
    2. Since your child possibly has hydo (I say possible because many are misdiagnosed in utereo), get a referral to a good neurosurgeon from your peri.  We met with our neuro before our DD was born and he laid out the steps we would take.  It was easier to process without a baby in my arms.  Our neuro recommended our pedi and I cannot tell you how glad I am!
    3. Make sure that they are planning to do genetic testing on your child.  Cord blood can be collected at birth so they don't have to stick your child again. 
    4. Learn about your state's Early Intervention program.  Your pedi can help you with this as well.
    5. Again, your pedi is going to be a major component of your child's medical team.  Be prepared (but not worried), that your child will probably also see a neurologist, geneticist, opthalmologist (some acc kids have optic nerve damage), endochrinologist (though this may be later down the road--malformed pituitary glands are also sometimes associated with ACC), therapists...and I feel like there are more, but I am not sure.  It can sound overwhelming, but it is managable!
    6. Oh, while you have time, learn what your insurance will/will not cover.  Find out if you need referrals for specialists and how to find out if they are in your plan (if applicable).  You can usually find all of this online.
    7. Find a pedi you love.  Really, I cannot say this enough.  If you do nothing else, find a pedi you LOVE...he/she will be your best friend.

    There are more and more of us on the board with acc kids.

  • cbehrcbehr member
    Thank you both for your responses.  We aren't too worried - we know that God is never out of control and that He has created this baby exactly how it should be.  The unknowns are a little nerve wracking, but we are finding out more by the day.  Those links are great, and you both gave advice I hadn't thought of!  I will keep in touch if there are more questions I have for you! Thanks! :)
  • Hi Carrie, my name is Carri also. I have a DS who is just over one year that has ACC.  We found out about 36 wk and it was (I hate to say) the worse day of my life. i googled everything and as you said the unknown is what killed me. But our DS is just over a year now and doing just great. he is right on track developmentally except with gross motor skills. He isn't crawling or walking at 13 mo. He likes to stand and sit but needs help getting into those positions.  He learned to sit up around 5 mo and has a larger head, but so does his dad! Anyways, my point being try not to get too wrapped up in the unknown. Even kids who have no DX are unknown how they will develop, so why should we be so worked up on our kiddos who have ACC. they will develop as God intended.  I hope that you can continue to enjoy the remainder of your preg and enjoy your child once they arrive. please feel free to contact me or check out my blog for updates. my email is carribeauprez@hotmail.com, congrats on your new baby, enjoy it.
    1 current MC 2011, cautiously pregnant again EDD 4-10-13~STICK BABY
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    After 1 MC 2007, 2 CP, Cade Anthony is here:
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  • cbehrcbehr member

    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!

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