Agenesis of the Corpus Callosum Diagnosis

I just like the way this picture shows the Corpus Callosum

The doctor called us back and without going into all the details he pretty much said that Yes Noah's optic nerve in his left eye was almost nonexistent and the he is blind in that eye....."and oh by the way" the MRI also showed that he has a completely underdeveloped Corpus Callosum which is called Agenesis of the Corpus Callosum (ACC for short).

What!?!  He was so casual with this news and did not go into ANY detail whatsoever other than to say "some people never know they have it and can live totally normal lives."

We got off the phone and immediately started to google ACC and were hit with page after page of the horrible symptoms and unknown outcomes for our Noah.  We were once again a total mess. The word "Delay" was used for every aspect of the human body and mind.  Cognitive, physical, social, ect.  We repeatedly read the words "handicap" "mental retardation" "seizures" and "special needs."  Devastation, guilt, remorse, anger, sadness, fear, worry, terror, confusion, pity, and just plain hurt were just Some of the feelings and emotions we were feeling. 

This is what a Corpus Callosum should look like

This is Noah's being very thin and small

In a nutshell Noah is missing a large portion of the middle part of his brain that connects the two halves of the brain together.  This section of the brain is called the Corpus Callosum.  You will see in the below MRI photo of Noah's brain that he is missing the entire back end (posterior) as well as most of the "thickness" of his Corpus Callosum.  So because he still has a tiny bit he is categorized as "Partial" Agenesis of the Corpus Callosum or P-ACC.

At first we thought this might be good news that he has a portion of his Corpus Callosum because we were thinking that maybe this meant he has some better connections since he still had a little bit.  In reality though it doesn't have any different of an outcome than those who are missing 100% of their Corpus Callosum. The brain is a very tricky vessel. There are many cases of brain injuries where the brain is able to reroute itself and make new connections.  However, there is no way to actually make the brain reroute itself.  It is something it has to do on its own.  We can only hope that since Noah was born with his brain injury/abnormality and being still so young that hopefully his brain will decide it still needs to grow and make new connections.  Some have said that stimulation helps the brain fire off new signals and create new neurons and synapses.  I am not sure how accurate that is but all the same we try to keep Noah in a constant state of stimulation with music and textures and colors and movement.

Sometimes it feels like we are on this stop watch that has given us a certain number of days where we might be able to help Noah's brain.  We constantly feel like we are in this race or something to do as much as we can for our son before his brain is fully developed.  It gets exhausting and the worst part is we have no clue if what we are doing is even helping at all.  Maybe it helps my husband and I just knowing that we are trying the best we can to do something...anything.