Thank you for sharing your stories. I am so scared of whats to come. I am 36 weeks pregnant with our second child and up until 6 weeks ago everything seemed to be perfect as the doctors said from my ultrasounds. Then we were referred to a high risk because her ventricles were dilated but they said not to worry bc it usually sorts itself out and they dont see anything else wrong. Well this past week we received results of the fetal MRI and she has ACC. It kills me to not know what to expect. Does anyone recommend having an amnio done?
Melly1019 Melly1019
26-30, F
5 Responses Jan 27, 2013

Hi Melly!

I was just in your shoes not too long ago. I totally understand what you are going through. I was told about my daughters ACC at 19 weeks gestation. I read A LOT on the subject and researched almost every site that offered any info. I had so many questions and not enough answers. I was scared, and felt totally alone in this. I was angry, confused, sad all at the same time. Then I had to regroup and get myself together as best I could and get a hold of the situation. I know that the internet can scare the heck out of you when it comes to ACC. But, it helped a lot too. I was able to get more info as well as actually seeing YouTube posts from parents and others diagnosed with ACC and most were very helpful. I would suggest to research as much as you can, and PRAY!!!!! Only God knows what the outcome will be.

I didn't know what to expect once my daughter was born, but I did know that I would love her unconditionally, with everything in me. I know you will do the same.

As of right now my daughter will be a month old on the 30th. She is holding her head up as much as expected for a month old baby. She's eating great, she can suck and swallow with no problems, thank God. She's moving her arms and legs good. She follows with her eyes, she's very alert. So I said all that to say that all is not lost, I know its scary now, but there is a reason that you were chosen to be this angel's mother. You will be fine and so will your baby no matter what the outcome.

If you ever need an ear, please don't hesitate. No question is to small or too big.

Hope to hear from you soon!

Hope all is well with your daughter. My daughter is twelve and has ACC. Hers is actually hypogenesis. I had an amnio that came back with no genetic abnormalities. No one would know by looking at her that she has this condition. She breast fed immidiately after birth. She passed all of the tests done at the hospital and by the social worker who visited our home. She reads above grade level. Her writing is fantastic. She does competitive dance. She has done well in math until now. It is involving multiple steps and she is struggling a bit. She began reading at such an early age, she qualified for our district's gifted program. Don't give up hope. I read a lot online and most of it will scare you. One thing I have learned is that every case is different. My daughter took years to tie her shoes, but I bought Velcro. She finally got it in 5th grade. She still doesn't do a good job with pony bands either. She can't ride a bike yet. She doesn't do we'll with directions. But you know... Lots of people can't either. In closing, our daughter is intelligent. She looks and acts like the other kids in her grade. (Usually better!) best wishes to your little darling.

Hope it's going well. did you get the amnio done? It can't tell you everything but it can give you an idea f what to expect.
I just shared our story on the subject homepage.


Melly, our daughter with ACC is 26 & recently married! Fetal MRIs were not done in 1986, so I had a series of 11 ultrasounds, to monitor the midline structures of her brain for any "shift". All we knew was she had enlarged ventricles. Because there was not a large enough "pocket" to do an amnio, the docs decided to take her 6 weeks early. An MRI the day after her birth, diagnosed her ACC. The team of docs who had been following her were a blessing for us. As she had no other issues, they told us we may have never known had it not been for the ultrasound. We do feel we were very blessed. Our daughter went through regular school. She had to work hard but managed Cs & B's. She got an Associate Degree--it took 4 years but she did it. She wanted to be a teacher but she realized she could not achieve that. She loves kids and was able to get a job in a preschool.... She is great with these kids. She drives 20 miles to work. However, as I said, she is 26 & here I am. It seems every time we reach another milestone, I look to see if there is any new information. The basic facts that you read in articles on ACC are what we found to be true. She has been a great blessing to us. She is a beautiful girl whose brain is wired a little different.

Not sure. I was referred to a high risk when I was 34 weeks along who told me that I didn't have enough time for the results to come in before I delivered because the results take awhile. But he was an a$$ who told me that my son was probably going to die at birth anyway so you may want to take what I just said with a grain of salt.