He is one of my favorite people. His mom and me are great friends, and he is just 6 weeks older than HJ.
We even had a double baby shower together…
Oh pregnant bellies!
When Courtney was 28 weeks pregnant, little baby Alex was diagnosed with a condition called Agenesis Corpus Callosum. Have you ever heard of that? I hadn’t either, which is why I want to help spread awareness!
With this diagnosis, Courtney and her husband reached out to a group called NODCC, or National Organization for Disorders of the Corpus Callosum. Here is some info from there website to help explain that the diagnosis means:
The corpus callosum (call o sum) is the largest connective pathway in a human brain. It is made of more than 200 million nerve fibers that connect the left and right sides (hemispheres) of the brain.
If we cut a brain in half down the middle, we would also cut through the fibers of the corpus callosum. When looking at the middle side of one half of the brain, for example, in magnetic resonance imaging (MRI), the corpus callosum looks like a cross-section of a mushroom cap at the center of the brain.
Each hemisphere of the brain is specialized to control movement and feeling in the opposite half of the body, and each hemisphere specializes in processing certain types of information (such as language or spatial patterns). Thus, to coordinate movement or to think about complex information, the hemispheres must communicate with each other. The corpus callosum is the main connector that allows that communication.
In a typical infant brain, the corpus callosum develops between 12 to 16 weeks after conception (near the end of the first trimester). While the entire structure develops prior to birth, the fibers of the corpus callosum continue to become more and more effective and efficient on into adolescence. By the time a child is approximately 12 years of age, the corpus callosum functions essentially as it will in adulthood, allowing rapid interaction between the two sides of the brain. From this age on (and typically earlier) as the corpus callosum becomes increasingly functional in their typically developing peers, children with ACC appear to fall behind developmentally because the corpus callosum is absent.
Physically, complete ACC is a condition that does not change. It will not get worse. Since the corpus callosum is already absent, it cannot regenerate or degenerate. Likewise, in partial ACC and hypoplasia, once the infant’s brain is developed, no new callosal fibers will emerge.
In that sense, disorders of the corpus callosum are conditions one must “learn to live with” rather than “hope to recover from.” Long-term challenges are associated with malformation of the corpus callosum, but this in no way suggests that individuals with DCC cannot lead productive and meaningful lives.
• Behavioral Characteristics Related to DCC
This is an overview of the behavioral characteristics which are often evident in individuals with DCC.
- Delays in attaining developmental milestones (for example, walking, talking,reading). Delays may range from very subtle to highly significant.
- Clumsiness and poor motor coordination, particularly on skills that require coordination of left and right hands and feet (for example, swimming, bike riding, tying shoes, driving).
- Atypical sensitivity to particular sensory cues (for example, food textures, certain types of touch) but often with a high tolerance to pain.
- Difficulties on multidimensional tasks, such as using language in social situations (for example, jokes, metaphors), appropriate motor responses to visual information (for example, stepping on others’ toes, handwriting runs off the page), and the use of complex reasoning, creativity and problem solving (for example, coping with math and science requirements in middle school and high school, budgeting).
- Challenges with social interactions due to difficulty imagining potential consequences of behavior, being insensitive to the thoughts and feelings of others, and misunderstanding social cues (for example, being vulnerable to suggestion, gullible, and not recognizing emotions communicated by tone of voice).
- Mental and social processing problems become more apparent with age, with problems particularly evident from junior high school into adulthood.
- Limited insight into their own behavior, social problems, and mental challenges.
These symptoms occur in various combinations and severity. In many cases, they are attributed incorrectly to one or more of the following: personality traits, poor parenting, ADHD, Asperger’s Syndrome, Nonverbal Learning Disability, specific learning disabilities, or psychiatric disorders. It is critical to note that these alternative conditions are diagnosed through behavioral observation. In contrast, DCC is a definite structural abnormality of the brain diagnosed by an MRI. These alternative behavioral diagnoses may, in some cases, represent a reasonable description of the behavior of a person with DCC. However, they misrepresent the cause of the behavior.
I know, it’s a lot of medical jargon. But you know what is absolutely incredible? Little Alex is 3 years old and has met milestone after milestone. He is an amazing, silly little boy.
And while Alex’s family knows they may have a few challenges down the road, they know how blessed each and every day is with this little miracle.
That is why they want to help give back to the NODCC, the organization that has helped to support them! Click here to see their fundraising site and learn how you can help the NODCC. If you can, please share this post with everyone you know. If nothing else, it will help to spread awareness!