DCC Awareness Day: The Beginning of Grey’s Journey
July 2nd is World Disorders of the Corpus Callosum Day, it’s held on this day as it marks the midway point of the year, similar to how the corpus callosum is the bridge that connects the two parts of the brain - the right and left hemisphere. When someone experiences a disorder of the corpus callosum (DCC) their superhighway is damaged, missing, or not completely built. So, in order for the brain to move the information where it needs to go it has to take the “back roads”. This manifests as a variety of different challenges that spans a broad range of disabilities. So why do I care? My now, 3 year old son Grey, has hypoplasia of the corpus callosum, a rare condition where the corpus callosum is thin or partially missing. There are many other types of rare corpus callosum disorders and if you’re curious about learning more in-depth scientific based information I highly recommend checking out the National Organization for Disorders of the Corpus Callosum (NODCC). They have great information and it has been super helpful to me and my family.
This is Grey’s story, or at least the first part of it, he is only three. This isn’t something I’ve shared with many people - mostly close friends, family, and co-workers. A big part of me doesn’t want everyone to know because I fear Grey will be put into a box. That people will define him by his disorder instead of the sweet, funny little boy he is. Plus, I don’t have many answers about his condition myself and that’s really frustrating as a mom. But I’ve decided that not talking about it, makes me feel alone. And if there is any way by sharing our story it helps someone else, I’m willing to combat the potential fallout.
Grey was born in the wee hours of Mother’s Day. We had a fairly uncomplicated pregnancy, we did some of the extra tests provided by the doctor, such as the chromosomal test (not really sure what it’s actually called but my fellow mommas will know) and everything checked out great. Weeks after being born we did start to notice Grey’s head always slumped to one side, turns out he would be diagnosed with torticollis and had to go through a few months of physical therapy (PT) to correct the weakened muscles on the left side of his neck. After that we started to notice more delays, sitting up, crawling, etc.
Numerous times we were told by medical professionals that kids develop at different paces and not to be too concerned. My persistent husband, and Registered Nurse by trade, insisted we continue to monitor him and seek other advice and answers. As Grey progressed and became increasingly delayed we were referred to SoonerStart, a federal and state early intervention program in Oklahoma that provides assistance for infants and toddlers with disabilities and development delays. Our major concerns at the time were that he wasn’t walking, talking, and seriously lacked in some fine and gross motor skills. During this time, we started to visit with an ENT doctor about his constant ear infections and weird breathing strider he had at night. It was decided he would get ear tubes and they would look to see what could possibly be causing the strider when he was sleeping. The results of the scope were inconclusive so our ENT doctor, ordered an MRI scan. It was after that MRI scan that we would finally find out that our little boy had hypoplasia of the corpus callosum and colpocephaly.
It was in some ways reassuring to finally have a diagnosis, but it was in the same vein very worrisome to know your child has a rare brain disorder. Of course, my husband Justin jumped on the computer and began to research these two conditions we’d never heard of before and what that could mean for our little Grey. I was hopeful still (being the eternal optimist) but my husband (being the perpetual pessimist, we balance each other) was crushed.
As the months moved on and we continued to provide the best possible support and medical care we could for Grey we were still left with a lot of questions and not very many answers of what this all means for our little boy’s future. We still don’t know much about HCC, mostly due to the fact that it’s rare and there hasn’t been much research. What we do know is that this disorder like many other conditions has a broad spectrum. Some people can have a DCC and not even know they have it until they get in a car accident have a scan and boom, you have a rare brain disorder, didn’t ya know? It can also mean though that Grey could struggle socially and academically. Some things I do know is that my little boy Grey is making huge leaps and bounds – and he has a pretty incredible tribe to help him along his journey. His gross and fine motor skills have vastly improved and he’s working on expanding his speech and vocabulary every day.
I am so thankful to organizations like NODCC, doctors, and parent Facebook groups that are striving for more answers, research, and support for families and individuals like us. I’m thankful for all the beautiful women at SoonerStart who helped us – Pam, Megan, and Pam (there were 2 Pams!). Dr. Digoy, who was instrumental in finding a diagnosis for Grey. Dr. Stephens, who continues to care for and support Grey. Dr. Poland and Dr. Stucco who are working with us to find more answers and support. The crew at Oklahoma Pediatric Therapy Center who helped with PT, OT, and speech. And thanks to the many others who help and treat our little boy the same as any other rambunctious threenager. The journey isn’t over, it’s just begun, but I’m certain we’ll make it fun.
“As soon as I saw you, I knew an adventure was going to happen” -Winnie the Pooh