Agenesis of the corpus callosum

 Say what? I know, when we first heard those words we didn’t understand it either. I said I would tell you more about our only daughter so here it goes. We were overjoyed when we found out that we were going to have a girl. Our first daughter. My husband jumped from his seat to kiss me when the doctor doing the scan said “C’est une fille!”. Amazing, a girl. Finally. Most of you would say it doesn’t matter as long as the baby is healthy. It’s very important yes but we already had 3 boys. That’s a lot of boys. 

The doctor said that we would have to come back in few days, that he was having hard time taking all the measurements because of her position. Okay no problem we said. We went home and told the good news to our boys and my mother-in-law. Everyone was expecting a boy. What a miracle. 

So we went for a new scan again. Still trouble seeing everything so he suggested we’d come back in few days. But no worries, everything is fine. I got to see my daughter three times instead of once so I wasn’t going to complain. Third time he said everything looks good, come back in 10 weeks for the last scan. 

We had seen this doctor for our boys as well, he knew our history and how happy we were for our daughter. Ten weeks went by and it was time for our last scan before setting a date for my c-section. At the end of the scan all I could hear was brain, something not there. He gave me an address for another doctor, a specialist. We were lost but not really worried yet. 

I went to see the specialist alone because my husband was working that day. I left his office in tears. He basically saw so many things wrong with our baby. And he was mean, not compassionate at all. “You must go see a neurologist and do other exams.” Other exams, exams that I had never done for the other pregnancies. MRI and amniocentesis. I was so scared. Called my husband and he came back home immediately. When you hear words that you don’t understand first thing you do is Google them. In this situation it was maybe not the best thing to do. The amount of anxiety is unexplainable. There was something seriously wrong with our baby’s brain. 

Usually they don’t give you the results for the MRI immediately but my husband was persistent and forced them to tell. Partial agenesis of the corpus callosum. They couldn’t see anything else wrong. Well something positive I guess. My amniocentesis was scheduled for the 26th of December. I am a Christmas person but this time it was giving me more anxiety. 

The amniocentesis went fine and we were waiting patiently for the results. Once we had them we went to see the children’s neurologist at the hospital about our options. Her chromosomes were normal and MRI didn’t show any other malformations so it was considered isolated. And that was good news. I was 8 months pregnant. She had 80% chance to be “normal”. I hate that word. Who is normal? What is normal? 20% chance that she might be heavily handicapped etc. We were given the option to terminate the pregnancy. We must decide. The thought of losing our only daughter was unbearable. Not only I would have to have a c-section and give birth to baby girl without life. 80% is a lot. We decided to keep her. 

So what is this corpus callosum? “ The corpus callosum is the largest bundle of connections between the right and the left sides (hemispheres) of the brain. It is often described as a “bridge” that enables communication between the two halves of the brain.” (corpal.org.uk) 

I am sure it’s something you haven’t heard about either. What about the agenesis of the corpus callosum? “Agenesis of the Corpus Callosum (ACC) is a rare neurological condition in which the Corpus Callosum, the major “pathway“ for information which links the two hemispheres of the brain, fails to develop fully. The condition is usually diagnosed by CT (Computer Tomographic) or MRI (Magnetic Resonance Imaging) scan.

The effects of the condition are variable; ranging from normal development (where the condition may be undetected or be revealed incidentally), through mild developmental delay to severe learning difficulties, epilepsy, visual impairment and delayed motor development. There may be other brain malformations present, for example microcephaly (small brain) or hydrocephalus (obstruction of the flow of fluid in the head).”  (corpal.org.uk) 


Brain scan at 11 years old 

We got lucky. If we can say that. She has reached all of her milestones at normal range and hasn’t had any learning difficulties at school. There are subjects that are difficult for her but not more than for any other kid. We stopped going to the neurologist at 7 years old, he said that there was no point coming since everything was fine. She is turning 13 in January and is a lovely teenage girl (with a very strong character). She does have few health problems but we do not know if they are related to her ACC. But I will tell you about those later on. 


We started an association for different malformations of the corpus callosum in France. When I was searching for information almost only thing in French that I could find was a group on Facebook. I’ve been a member for more than 10 years now and since we have created RACCORD. I’m the head the international relations of our association. Our website is not up yet but you can find us on Facebook www.Facebook.com/AssociationRACCORD

Other great websites for more information about ACC:


www.corpal.org.uk

www.nodcc.org

www.ausdocc.org.au














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