They just diagnosed my unborn daughter with ACC. I have no idea what it is and was hoping that someone could give me some insight into what all it intails. I have a 4 year old son also but he has something called chromosome 10q deletion syndrome. I found a lot of information on it. I hoping that some one can help me with this. Please feel free to email me at . Thank you very much.
First of all let me tell you that I am extremely sorry that you had to find
this diagnose out during pregnancy. Please try to do as much research as you
can and just take all the information in, remember NO CHILD with AgCC is the
My daughter whom is now 10months old was diagnosed with Complete Agenesis of
the Corpus Callosum at 5 months of age. Ill let you know a little about her
in a bit.
Let me tell you in my words what I understand ACC is,
The human brain has the left hemisphere and the right hemisphere and each
control different functions in between these hemispheres there is a large
mass of about 2million fibers strands connecting the two sides of the
brain… this is what the corpus callosum is.
One Thing you must keep in mind is that NO child with AgCC is the same,
EVERY child differs. The outcome of agenesis of the corpus callosum can be
from very mild to moderate to severe mental retardation. Some children with
AgCC are very high functioning and some suffer from greater developmental
delay. Basically our children are " at risk " for developmental delays,
mental retardation, and midline problems meaning heart, intestine, lung,
Again always always keep in mind what I am about to say, because this is
what kept me going and made me have faith… "There are people in this world
walking around that have AgCC that have NO idea they are missing their
corpus callosum, there are times when AgCC is diagnosed accidentally, for
example they are a normal high functioning person never had a reason to get
a CAT Scan or MRI and they get in a car accident so they run their routine
exams do an MRI or CAT Scan and find out accidentally that they are missing
their corpus callosum and they are completely fine!!!
You will have to keep a close eye on your child and make a note of his
accomplishments and if he/she is falling behind example if your child turns
6-8months and isn’t sitting yet, if you child is 6 months and isn’t playing
with his/her hands etc. Im not sure if you mentioned where you are from but
I know that in most places they have a Children’s Early Intervention
Program, usually called Regional Centers. They evaluate your child and if
they feel he/she is developmentally falling behind they provide you with
therapies such as child stimulation, physical therapies, occupational
therapies, speech therapies, etc. all completely FREE!
OK my daughter is 10months old she is about 4 months behind, and I AM
TOTALLY FINE WITH THAT! She is at a 6 month olds level, she just begun to
shit on her own, she is now using both hands to play with toys at once,
before she would only use one hand at a time. She is the happiest jumpy
wiggly worm baby in the world, I couldn’t ask for a better child. She has
had some problems though, nothing that couldn’t be fixed… She had
intestine malrotation surgery at 5 1/2 months old, she suffers of apnea and
cyanotic episodes (turns blue and stops breathing)- she hasn’t had any in 2
1/2 months though she has astigmatism and will get glasses when she turns
one, she has abnormal chromosome 3 inherited from dads fam, she has a
feeding tube that will probably be temporary only I’d say 1 - 2 years. She
has an immature esophagus that lets her aspirate her formula into her lungs
as she eats and with therapies and time it should get stronger and we can
get her g-tube removed. My point being, that this is my child, I chose to
make her, god chose to give her to me, and I wouldn’t trade her for the
world, she is doing great progress. I believe she will walk until she’s 1
1/2 or 2 and that is totally fine I just get to enjoy more baby time with
her, the reason I say this is because she is standing on her own already at
10months she has strong legs!
Have faith…there are a lot of good and motivating stories out in the net
on children with AgCC and there are some that will bring your hopes down and
even frighten you for your childs well being, just know he/she is not like
any other child.
Please keep in touch, my email is email@example.com I will answer any
questions you may have to the best of my knowledge.
Complete Agenesis of the Corpus Callosum
Reflux- mild to moderate controlled with meds
Feeding Tube due to aspiration
Chromosome 3 abnromality
I forgot to mention that the corpus callosum is the mass in between the left and right hemispheres of the brain and it is used to tranfer information from one side of the brain to the other and the other way around. This being why some children with ACC have learing disabilitites. and all the other stuff I mentioned.
To give you more hope My son is 3 1/2, we found out in utero. He is doing almost perfectly normal, he has hit every milestone maybe a month or 2 behind but other than being alittle slower than the average child he is getting along very well. The worst things we have to deal with are his tantrums, he has a hard time dealing with his emotions. We dont know what the future brings but all we can do is keep hoping for the best. That is what you need to do. After I found out, the rest of my pregnancy was terrible. My advice to you is to take care of your self and not to stress if you can. Know that God does not give you what you can not handle. Congratulations on your new baby, you will be in my prayers.
I have to say I am not in agreement with anyone saying that they are sorry you found out inuteuro. My daughter is 6 years old and we have always known there has been something wrong with her since birth. Things like milestone delays some visual proscessing issues, nothing life threatening, no seizures thankfully. We just 6 months ago found out through an MRI that she has Complete Absence of the Corpus Callosum and Colpocephaly. Everything kind of went haywire when she went to kindergarten and the teachers said she was doing things they really couldn’t put it together because it was not typical learning problems. So we talked to the doctor and he said lets do the MRI. Now my life has been a rollercoaster trying to play catch up with therapy, doctor appt’s, testing and so on. Things we should have been doing since day one. Early intervention is key with this disorder. I beleive you are so lucky to know what is ahead so you can have a plan of action and be a strong advocate for your child. You have this quite time during your pregnancy to research and get all the info you need and line up the developmental pediatricians you will need and everything will be great. These kids are wonderfull, bright, funny, and the best thing that happens to us. So be excited that your having a baby and treat this pregnancy just like any other and when you have your baby treat it just like any other baby with love. Someone told me not so long ago not to treat my child as if she is handicapped but like she is just the same as anyone else. That was the best advise ever !!!
Hello and congratulations on your baby to be!
My situation was similar to yours and like one poster said I wish I did not know as it was hard to be so thrilled for a baby when all the doctors had doom and gloom to say. On the other hand, it has made me a stronger person and I have learned so much. Early intervention is key so in that sense, the other poster is correct. So, it seems there is a good and bad side to everything. Here is my story and I hope that it offers you just that…hope. My son was diagnosed at 20 weeks gestation with hydrocephalus…incorrectly. I worried, made myself sick and visited neurosurgeons that were willing to operate in utero. When my son was born, they told me in the OR (he was a C section) that he was healthy. We would learn the next day that he had ACC and from there more worry and wondering would follow. I can tell you that happily my son is wonderful. He has C-ACC but no syndromes and is a little behind in some things like potty training and his running is still immature looking, but he runs when doctors once told me he would not sit. He rides a bike with training wheels just like most kids his age (3 and 1/2) and he jumps and plays, is social and a good eater for the most part :). My beautiful son looks “normal” and the world certainly percieves him as such. I have been haunted for the last 3 plus years since my little boy was only 5 weeks old by a doctor who gave us no hope for him. He has exceeded every prediction he made for my little boy and my biggest regret is that I ever believed even for a short second that anything he said could be true for my child. Believe in your baby girl…she will be the best she can be. My son received early intervention and currently attends a preschool for children with delays as he has had some challenges with fine motor and speech (it is not as clear as other children his age, but is intelligable, just a little immature).
Have hope…because there is.
Best wishes to you and your family.
mom to Jimmy 3 and 1/2 C-ACC
and Alexandra Hope 16 mos. (no issues)