ACC diagnosis

junebug1027

Hi all, this is my first post here.  I am 36 weeks pregnant and we just got a diagnosis of agenesis of the corpus callosum as well as a cyst of some type this week.  Anatomy scan was normal, so this is a huge shock for me.  I really don't know what to expect.  We aren't doing any more testing other than an ultrasound until she is born since we are so close.  If any one else has a child with this diagnosis I would love to hear from you! I'm sure I'll be hanging around here more in the months to come.

junebug1027

I do know she will go to the NICU after she's born to be evaluated by a neurologist and/or neurosurgeon. And we will be delivering at a hospital with one of the best children's hospitals in the area so I feel confident that we will have a good start with that part at least.

Assembly_Reqd

Our son Nate has Hypoplasia of the Corpus Callosum. There are a couple of Facebook groups you can join. Pick the ones with the largest member count. I think it has "list-serve" in the title. I belong to the ACC one and an HCC one. There are a few Callosal moms who pop in from time to time here.

Keep in mind that there are adults in the Facebook groups who have ACC. This can be very inspiring, however some do have social interaction issues and can take things the wrong way or respond to things that incorrectly. Some ACC people are very literal!

I would join National Organization for Disorders of the Corpus Callosum (NODCC) they have a great website that includes videos of past national convention presentations as well as the handouts. This years National Convention is in Massachusetts. They have a children's program too, but your child has to be two to join it. We took Nate when he was 9 months old and he just hung out in the front of the meeting rooms playing on the floor. It was pretty overwhelming but nice to see and meet people in our region.

There is such a huge range of how affected a child will be. I think it really depends on if there is a related syndrome. Anecdotally you will hear that children with  ACC do better than those with HCC. There currently isn't any research to back that up. It really has to do with if genetics played a role or if there are additional brain abnormalities. Those children will be called ACC-Plus.

Nate is HCC-Plus. He has genetic deletions that caused it along with hearing loss, adducted thumbs and some vision issues. When we first found out at birth, I freaked out because I didn't know that other people talking about their ACCers could have a child with other issues as well. Our HCC child is nothing like the examples I found on the internet. Who is going to do a blog called "My Kid has ACC and Everything is Awesome!!" That would be a pretty boring blog.

He is like other callosal children in the fact that all of his milestones have been delayed. He crawled at 15 mo, walked with a walker at 20, walked unassisted at 28. He did his first sign at 12 months and first word at 15. He is age appropriate for signing (he goes to a school for the deaf) but at about a 24 month level for talking. He has some attentional problems and may end up with a ADHD diagnosis, but he is also a little socially immature, so maybe he actually has "3 year old ADHD" and not the clinical kind. He does NOT have autism, sleeps awesome, eats awesome and is a joy to parent even when he is being a shit to the cat.

We are so glad he picked us as parents! I am also glad I did not know about his genetic deletions when we did the CVS.(deletions were too small) Nor was the HCC caught on ultrasounds. We would have terminated based on the information we found on the internet at that time. Or, maybe upon further reflection, we would have decided to take a gamble on his outcome. We would have won for sure. He is not the child we dreamed of, but he is the perfect child for us. He has been a gift.

Welcome!

junebug1027

Thank you so much for the information and for your honesty. I am still trying to wrap my mind around the facts. The hardest part for me about this diagnosis is the wide range of possibilities based on different factors. That and the fact that much of this is wait and see. I hope that we find out more when she is born. Thanks again for sharing!

Assembly_Reqd

It is a huge, huge practice of patience.