A Parent’s Perspective – Stories of Parents of Children with DCCs

The smell of a fresh snowfall was in the air, sun shining through my freshly cleaned window. I remember my husband Robbie, two beautiful daughters, Ariyana and Brielle and myself sitting down at my handmade farmhouse table eating a delicious roast. We were all talking about how our day was when my husband and I decided to ask the girls if they would like another sibling to our family and discussed what adding another family member would look like.

Soon after that conversation, we received news that I was expecting. I have never been a patient person, so when we had the opportunity to find out the gender of the baby, we jumped at the chance. We did the blood work to find out the gender and did the screening to see if there would be any diagnosis that the baby would have. Our screening came back as low risk and a BOY! Our hearts were filled with happiness and I remember feeling serene.

Elated, we began to celebrate the news of adding a boy to our family. That excitement was short lived when I attended my 20 week ultrasound. My doctor noticed that my son Xander’s brain was a little larger than normal. I was sent to MFM (Maternal Infant Medicine), a high risk doctor. I was given a more in depth ultrasound where I received devastating news. The doctor told me that they could not visualize the Corpus Callosum. The doctor stated Xander had Agenesis of the Corpus Callosum. She described what that meant for the baby and what that meant for me.

While the doctor was speaking, I remember my whole world going black. The sounds around me slowed to a bone chilling silence. My eyes started darkening and my focus a blur, the smell of a sterile room pierced my nose, a constant beep on the machine slowly brought my attention back to the realization of where I was. What just happened? Was this doctor sure of what she just said? Did I cause this? I remember looking around the room for my husband, but he was not there. He was at home with the girls. Had I known I would receive news like this, life changing news, I would have made him come. I would have had a hand to hold, a shoulder to cry on, and just his presence.

After I collected myself and made the half hour drive home, I sat down on the couch in silence. My breathing fragmented, tears slowly filling my eyes. I could not find the courage to share the devastating news I just received. Robbie knew something was wrong by the blank stare on my face. He grabbed my hand and said “What is wrong?” I explained what the doctor had told me and how this could affect our son and our lives. I have known my husband for 10 years at this point and never once have I seen him cry. A tear slowly rolled down his cheek as he took a deep breath. I felt his sadness protruding from his being. “Everything will be okay,” Robbie said as that single tear dropped off his flushed face. I remember telling Robbie that no matter what, we will accept our son for who he is because he was chosen for us.

In my son Xander’s case, his diagnosis is C-ACC or Complete Agenesis, which means the middle part of his brain is completely missing. There is nothing to connect the two halves of the brain together. Newborns, children and even adults who have C-ACC could face many challenges throughout their lives and each case is completely different. There is no cure and no predicted outcome. You live one day at a time. Face one challenge and then face the next. Many children with this diagnosis have one or multiple of these challenges; cannot walk, talk, hearing impaired, eat without a feeding tube, vision impaired, smell, understand social cues, comprehend anything, learn at a normal pace, have fine and gross motor skills, ever use the bathroom correctly, have severe intellectual disabilities, etc.

As you can guess, our lives were turned upside down learning about this unheard-of, rare diagnosis. My pregnancy was very stressful and I developed depression and anxiety. Worrying nonstop about my son, what the future would look like for him, and the constant thought of “did I cause this” was always in my head. The heart wrenching anxiety that overtook my thoughts daily was overpowering.

Xander had a rocky start to his beautiful life. He saw many specialists, along with biweekly visits to his neurologist. He received his gene testing that determined that I was not the cause of his diagnosis and that it was a disruption of cells during his time in utero. That news lessened my stress knowing I was not the cause for my sweet boy’s diagnosis.

As time went on, Xander kept exceeding all the expectations of his doctors. He slowly grew to the point of not needing to be seen by any of his specialists except the neurologist. We celebrated every small accomplishment like it was a victory parade. Xander is now two and a half years old. While he still has his diagnosis of C-ACC alongside colpocephaly and ventriculomegaly, he is doing absolutely amazing. He truly is a miracle.

With this diagnosis, trying to picture what our life was going to be like was unimaginable. Not because he would be neurodivergent, or we would be faced with a new challenge, but because of how I know the society is. Going through this experience with my son, opened my eyes to a whole new world and made me learn not to take life for granted. It taught me to love each person for who they are, and to be kind to everyone because you never know their story. In society people view disabilities as that there is something wrong with that individual. In my eyes there is something beautiful about that person waiting to be found. Someone may look different, sound different, maybe even act out in public, but their heart is just the same as yours and mine. We should all be treated with kindness and love. This experience forever changed who I am as a person, a mom, and how I will teach my children to view others as they grow up.

The advice we have for other parents is that the journey ahead will be challenging, filled with uncertainty, worry, and stress—and that’s completely normal. However, if you have faith in yourself and lean on the strength of your family, you will overcome these obstacles. Over time, you’ll begin to view life through fresh eyes and learn to take it one day at a time. Trust that when you finally cradle that baby in your arms, every hardship will have been worth it. Some days may be difficult, but many will bring rewards beyond measure. Stay positive, be kind to yourself, and shower that little one with all your love.

The NODCC wishes to share more experiences from parents. To share your story, please reply HERE.