By: Laura Thompson
Updated: Jan. 25, 2023
Originally Published: Feb. 13, 2021
As a parent, there are moments when my child emits an unusual odor—one that goes beyond the typical scent of body odor. However, before jumping to conclusions, it’s crucial to understand that this isn’t due to poor hygiene or a lack of care.
My son, Alex, grapples with a rare condition known as Hirschsprung Disease, a disorder that affects the nerve cells in his digestive system. This condition led to a complete blockage of his colon at birth, resulting in significant health challenges, including severe infections and complications. It’s a heavy burden for a child to bear.
To the outside world, Alex appears to be just like any other kid. Unless you happen to see him in a swimsuit, you wouldn’t notice the scars across his abdomen from multiple surgeries or the complex internal rerouting of his digestive system. Yet, there are times when he has an overpowering odor that far exceeds the typical scent one might expect. His stomach often emits loud, uncontrollable growls, signaling distress rather than hunger. There are moments when he rushes to the restroom, as though he’s racing against time, or spends what feels like an eternity in there.
At 9 years old, he’s still in that delicate phase of boyhood, but I can’t help but worry about the judgment he may face as he progresses to fifth grade, middle school, and eventually, the workplace. We try to manage his condition with medications and various interventions. However, sometimes the only option left is to reroute his digestive system through procedures like the Malone Antegrade Continence Enema (MACE) or a colostomy, which can result in occasional leakage and odor.
This current state of affairs has been anything but easy. Despite his cheerful demeanor, Alex has faced more medical challenges than many adults do in a lifetime, including surgeries, painful procedures, and prolonged bouts of diarrhea. Thus, experiencing occasional unpleasant smells is the least of his worries.
While Hirschsprung Disease is relatively rare, many children deal with invisible gastrointestinal disorders such as irritable bowel syndrome (IBS) and gastroesophageal reflux disease (GERD). For these children, experiencing foul odors and racing to the bathroom is simply part of their reality. It’s not a reflection of laziness, poor hygiene, or bad manners; it’s simply their life as they know it.
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In summary, the challenges my son faces are much deeper than the surface-level perceptions of “stinkiness.” His condition is a reminder that what lies beneath can be complex and often misunderstood.