What are the pro’s of knowing about ACC in utero ?

I wish I knew the answer to this - all I have done since I got the diagnosis 2 days ago is research and research

Hi all,

It just breaks my heart all the (sometimes, often? unecessary) worry that so many of us have gone through/are going through because of medical imaging/testing. Someone asked what the benefit of knowing your child has C-ACC or P-ACC in utero is - in my case, I wish I didn’t know. I am sure that in some cases - knowing helps early intervention if necessary, or understanding the root cause of something else, but in my particular case, I wish I didn’t know. My daughter is healthy and so far is developing normally, but every little thing I worry about because my vision of her “health” has been biased by this information. If she struggles with reading, for example (she is 2 now), I might be quick to blame it on the ACC, when struggling with reading, in my opinion, is normal on the bumpy road to learning all that we need to in school. Just my two cents, for what its worth.

All I did was research and research when we got her diagnosis (which was originally hydrocephalus until we had an MRI when we changed cities and drs.) - and I wish I had found this board sooner. I am glad that you have - so you can see that a diagnosis of ACC is not as scary as the internet would otherwise lead you to believe.


blsmom agenesiscc-cpt8576@lists.careplace.com wrote:

I didnt know that my daughter had C-ACC until she was 6. This was after many visits to different doctors until finally one said lets do an MRI and see whats going on with the brain. I see many people have found out by ultrsounds as early as 18 weeks pregnancy. Were these regular OB/GYN’s and regular ultrasounds. How come my daughters ACC was’nt detected we had many ultrsounds throughout my pregnancy ? I even had a level 2 done at 19 weeks ? I would think this could have prepared us with some info if we would have known !!

We also got the diagnosis in utero and struggled with this question. My husband is very laid back and in the begining felt that if we just love our baby enough all will be well. My personality is a bit different and I admit I am type A - so worry comes naturally to me. My take on the diagnosis was that we could have a chance to educate ourselves and be pro-active. Think about the parents out there with children who are autistic who don’t get a diagnosis until the child is 3 or 4. The time wasted in the earlies developmental years is really crucial.
My husband and I spent the rest of our pregnancy doing some research and trying to focus on how and when to explain things to our families. Make sure you let them know what is going on. You will need their support from the begining and the sooner they understand the better they can be there for you.
When our son was born we began the crazy rollercoaster ride of docs and specialist. We started early intervention services when he was 4 months and had his eyes and hearing checked very early on. We also began the genetic testing to see if a syndrom was the cause of the C-ACC. It was not.
Also, understanding early on that your child has a mid-line birth defect and what that may entail will help you ask more informed questions of your doctors and therapist. Write questions down before you visit and make sure your concerns are voiced.
This diagnosis does not mean that you won’t be a great parent or that your child won’t lite up your life like you expected. It means that on top of parenting you get to become an advocate for your little one. So, love the child and yes he or she will be fine. But also fight like hell for them and they will get what they need. That is the difference of knowing early.


Thank you so much for your reply. I feel like my life is a complete rollercoaster now that I have a diagnoses. My daughter is 6 and I feel that so many years have been lost. Now we are finally arranging the proper therapy that she should have had so long ago and we have the proper doctors in place. We still have so much more testing to do. I guess I am angry because I feel that I should have been told this while she was in uteuro so that I could have had all this started way before now.

Dear Jaquays
I can only imagine your frustration. You must feel the need to make up for lost time. But think of it this way - maybe the time was not totally lost. Maybe your daughter was getting some therapy in just every-day play and conversation. Maybe she got the benefit of you not knowing - so maybe you pushed her like any mom would do of a child without a diagnosis. The silver lining is that you probably didn’t feel a need to compensate for her over the last few years.
But now you know and knowing allows you to accept the challenges she faces and understand and even greive a little. Some family members get irritated with me when I paint the realistic picture of my son’s future. They say I’m selling him short by not envisioning mariage, college and a highly skilled job. I say I would be selling him short by not understanding who he is and accepting all that he can be while being realistic. So instead of buying toys he would hate, I still find todler toys he would love. And instead of signing him up for team sports, we go swimming each week. I guess this would be the same for me if he were a typically developing child. I would find his stengths and nurture those. Then I would consider his weaknesses and set some goals. Then I would just love him. You have probably been doing these things for your daughter for the past 6 years too!


Crystal you are absolutly correct ! But knowing something is wrong and not getting an answer is awful ! I fully agree with your attitude though !!


Someone asked why and how babes were diagnosed in utero - my story was that it was routine US.

The drs. detected enlarged ventricles during routine US, sent me to high level US, when they said she had hydrocephalus, can’t remember how many weeks pregnant I was, probably 20 something. We struggled with this diagnosis for a long time, but then moved to a different city near the end of the pregnancy. The new dr. (a GP) ordered a fetal MRI - which showed C-ACC. I was grateful for the fetal MRI which cleared up the questions surrounding what was going on. I am upset that the dr.s in ottawa (canada) didn’t send me for further testing after that initial diagnosis, but the dr. was a really unpleasant man - a whole other story that I am sure some could relate to.

jaquays agenesiscc-cpt8576@lists.careplace.com wrote:


I don’t really think that there is any benefit in knowing early. I have 2 children with ACC. My first one wasn’t diagnosed until he was six weeks old, my 2nd one when I was 22 weeks pregnant. I wasn’t able to enjoy the rest of my pregnancy due to all the worry. My first son is severly handicapped and the doctors kept telling me that the likely hood of a 2nd child being any better developmentally was unlikely.

I can tell you that my 2nd son is much better than my 1st son. He just turned a year old and is developmentally older than his brother already. He’s at about a 7-8 month range. My first son was always in and out of the hospital for various things ranging from pneumonia, fever, and numerous surgeries not necessarily related to ACC. Everytime he went in, we had a newborn again. He’s now 4 yrs old and has a developmental range of 4 months.

Also, at 31 weeks, I had an ultrasound where 2 techs and the doctor all believed they saw the corpus callosum. I haven’t had a MRI done yet. It will be done this summer, but all it’s going to tell me is how much of the corpus callosum he has. (We are assuming he has ACC due to an ultrasound of the brain done when he was born. I wouldn’t allow them to sedate an otherwise healthy newborn.)

I don’t know about your state, but I wasn’t able to put them in any programs till they were 4 months old. I do believe in early intervention, as much as possible. But, since every child is different, there may be no delays at all. My son’s G.I. has complete ACC and was always giving us hope that they could develop into normal children.

This is sounding a little sad, and I don’t mean to be. Either way, the love of a child cannot be measured and they do show you love. My oldest son can’t walk, talk, eat, or do anything that would be considered normal except showing that he loves you. He always puts a smile on my face when I hear the biggest scream of joy coming out of him.

I see that you have two children with ACC. I was just wondering if you have had any genetic work done? I haven’t seen very often that there are multiple children with ACC. We have one child with ACC and wodner about the future with more children. As far as they can tell now with the latest testing it is not genetic with my son. Of course I love my son unconditionally but I don’t think I can go through the heartbreak again. He also needs everything we can give him. You are wonderful to be able to care for two special needs children.

Darenadee agenesiscc-cpt8576@lists.careplace.com wrote:

Carnegie Mellon in Pittsburgh has been doing some research on CC anomalies as they relate to autism. I have Aspergers, all my kids have some form of autism stuff and my youngest has CC dysgenesis and PDD-NOS. Genetic stuff does not seem to have advanced to where anything in particular can be diagnosed in many cases though, as my son has had 2 workups and nothing shows up.

Jane in MN

abs agenesiscc-cpt8576@lists.careplace.com wrote:

Do you have any other children with ACC? Is CACC your child’s only brain diagnosis?

Myrica agenesiscc-cpt8576@lists.careplace.com wrote:

Not sure if you are asking me, but I have only one child, and yes C-ACC was her only diagnosis (first mis-diagnosed as hydrocephalus because her ventricles were large - like 11 to 12 in diameter - but after the MRI was interpreted it was thought that the ventricles were enlarged because they were taking up the space where the CC would be). I did turn down an MRI after she was born (we only had fetal), because like someone else wrote, I too didn’t want to sedate an otherwise healthy child.

abs agenesiscc-cpt8576@lists.careplace.com wrote:

Thank you.
We have not had a post natal MRI for my son yet. He will be having one in June though because of issues with his eyes. We too found out about the ACC because of enlarged ventricals. This was found through ultrasound. They did the prenatal MRI to check for complete ACC or partial. They also wanted to make sure that there weren’t any other issues. But… when he was 4 months old, they diagnosed him with microcephaly. We’ll see what happens at this MRI.

Myrica agenesiscc-cpt8576@lists.careplace.com wrote: