A little about Master JJO and the Agenesis of the Corpus Callosum diagnosis (ACC)

Starting is probably the most daunting part of this blogging journey...  My name is Mel and I wanted to share our journey with our little superstar.

It's been 8 years since Master J was born and there have been lots of ups and downs during that time.

J's list of diagnoses went in this order:  Agenesis of the Corpus Callosum (diagnosed in utero), Trisomy 8 Mosaicism just before he turned one and most recently Autism Spectrum Disorder - Level 2.  So, to shorten all of those we have ACC, T8M & ASD2.  

I was 20 weeks pregnant having my morphology scan when they noticed dilated lateral ventricles in his brain.  At a 26 week scan they had grown so we were referred to the Maternal Fetal Medicine (MFM) department at the Hospital in the city.  At 32 weeks we had a scan with there and our world was turned upside down.

The lateral ventricles were the same size as the 26-week scan, but they also noticed bub's corpus callosum was missing.  As well as this, I had too much amniotic fluid which they thought could indicate a syndrome of some kind.  We were given the most terrifying worst case scenarios.  The one that still sticks out in my mind is "Your unborn child may not walk or talk".  We had gone through assistive reproductive technology in order to fall pregnant, so this is the absolute last thing we were anticipating after what had already been a bumpy journey.  We proceeded to have an MRI and an amniocentesis.  The amniocentesis showed no chromosomal abnormalities and the MRI confirmed complete Agenesis of the Corpus Callosum.  I ended up having 1.5 litres of amniotic fluid drained at 36 weeks because I was so uncomfortable and struggling to breathe, whilst sitting down at my desk job.

The Corpus Callosum is basically the mega communication highway between the left and right hemispheres of the brain.  It is the largest bundles of nerves (200+ million) in the entire nervous system.  Agenesis of the Corpus Callosum is a congenital (lifelong) brain abnormality.  It has a huge spectrum of potential challenges.  I truly believe that the prognosis depends on your child as well as early intervention.

As I start this blog, J is 8 years old and in Grade 3.  We weren't given much in the way of hope or positivity when we got this first diagnosis, so my dream and goal is that reading through these blog posts gives other parents some hope.