This guest blog post was written by Amy Connolly, RN, BSN, PCCN of a community hospital in Chicago.
The corpus callosum is the large bundle of nerve fibers that serve as a pathway, connecting the right and left hemispheres of the brain together. Disorders of the corpus callosum, or DCC’s, are “conditions in which the corpus callosum does not develop in a typical manner.” This important brain superhighway is usually formed by 12 to 16 weeks after conception. However, there are some people born without a corpus callosum at all, this is otherwise known as agenesis of the corpus callosum. My 4 year old son has hypoplasia of the corpus callosum, which means that his corpus callosum is thin and therefore may be less efficient. A few other included disorders are partial agenesis, as in partially absent, and dysgenesis, or malformation, of the corpus callosum.
DCC’s, like Autism, are a spectrum disorder, where there is no textbook answer to how happy or healthy someone will be just based off of diagnosis. Many parents are finding out during pregnancy due to the advancement in technology and equipment. Unfortunately, they are not always getting the best advice or support, due to the lack of knowledge on provider’s part. My best advice to them is to be proactive with recommended testing and therapies, but not to stress over the diagnosis itself. Having a disorder of the corpus callosum is nothing to fear in itself.
Every individual with a DCC, will have their own paths and abilities. The diagnosis should not define them or stop them from reaching their true potential, whatever that may be. There are plenty of people who found their diagnosis after a MRI or CT scan was done due to headaches or some type of accident. Someone with a DCC may live a pretty ordinary life and you would never have even been able to tell that they had a “special” brain, if they did not have a diagnostic test for some reason or another. Many people with a DCC have trouble keeping up with their peers when they get closer to their teen years. They may be socially awkward and they may not get the punchline of jokes right away.
For others with a DCC, a lot of therapy and repetition will help them to tell their story. Many of those with a DCC may also be diagnosed with ADHD, Autism, depression, anxiety, and so forth. Some who haven’t had an MRI or CT scan may only be diagnosed with one or more of the other things and do not even know that they have this disorder. Many people with the disorder may also have seizures, low muscle tone, and sensory disorders. Other midline defects can also be common such as eye or vision problems, heart problems, thyroid or growth disorders, and the list goes on. Some people with a DCC may also have feeding tubes as children and they may or may not still need them as they get older. There is a lot we still do not know about disorders of the corpus callosum, but what we do know is that people with them are pretty awesome! They may usually have to work harder to make those important brain connections, but they always continue to put smiles on our faces no matter how big or small their accomplishment may be in someone else’s eyes!
The National Organization for Disorders of the Corpus Callosum, NODCC, is a nonprofit organization that strives to find out more about people like my son and to spread awareness about the disorder. The NODCC holds a conference every other year in a different U.S. location for individuals living with a DCC, families, professionals, and anyone else who would like to attend. There are multiple sessions on different tracks going on at the same time. This year approximately 600 people are expected to attend. Attendees will be from all over the U.S., with some even flying in from abroad. The conference is at the Marriott O’Hare in Chicago from July 22-24, 2016. For many with the disorder, and their families, conference is like a home away from home. A place where everybody gets each other without having to say a word. High functioning, low functioning, we are all functioning. Together.
To learn more about disorders of the corpus callosum, please go to www.nodcc.org.
Amy Connolly RN, BSN, PCCN lives in Franklin Park, Illinois. Amy is a registered nurse at a community hospital in Chicago. Amy is also stepmom to Patrick (16), mom to Jesse (6), Jake (4), and Marcey (2). Jake, now age 4, was diagnosed with hypoplasia of the corpus callosum at ten months of age, after a MRI was done due to delayed developmental milestones and a lazy eye. Amy’s nursing experience did not prepare her to navigate the world with a child with special needs. She has learned a lot over the last four years and enjoys sharing and learning more with other families. Amy is also actively involved as a volunteer for the National Organization for Disorders of the Corpus Callosum due to her strong belief in their mission and values.