As a nurse in the Pediatric Intensive Care Unit at Arkansas Children's Hospital, Shonda Grappe has learned not to overreact. So when her daughter, Maggie, started having digestive issues as a toddler, she wasn’t particularly alarmed. "Symptoms would come and go," she remembers. "I would be about to bring it up with her pediatrician, and then they would clear up again."
Then, as Maggie was about to enter pre-K, the frequency of her bathroom visits finally led Shonda to consult Maggie’s pediatrician. Presented with Shonda’s detailed logbook and dutifully collected specimens, the pediatrician suspected irritable bowels and put Maggie on fiber. Unfortunately, the fiber triggered a painful flare-up. Maggie was admitted to Arkansas Children's Hospital, where she was diagnosed with Crohn’s disease.
Crohn’s disease causes inflammation of the digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. It can be painful and sometimes may lead to life-threatening complications.
Almost overnight, the Grappes had gone from being believing Maggie was a healthy child with a temporary ailment to learning she had a severe chronic illness. It was enough to pierce even the tough skin of a PICU nurse who’d seen it all.
"I was initially very traumatized," remembers Shonda. "I cried every day at least once for two months. I was so overwhelmed with knowing that this was something she would have to live with her entire life."
As the Grappes adjusted to their new reality, Shonda became determined Maggie’s condition would not adversely affect her character. "Taking care of sick children, I often see chronically ill kids who are allowed to misbehave because they are sick. I wanted her to be held accountable. We have never treated her any differently. We told her, 'This is something you will have forever. This will not hold you back, and we will learn to deal with this together.’ It’s a blessing we now know what it is."
A recent graduate of North Little Rock High School, Maggie says of her condition, "It has definitely made me a stronger person. You have these obstacles that you can learn to overcome. It teaches you to face adversity and overcome the challenge."
The family credits the Gastroenterology Clinic at ACH with minimizing the chances of long term damage to Maggie’s digestive tract by taking a conservative approach to treatment. Shonda notes that Maggie was unusual in being diagnosed so young – Crohn’s is not often identified before adolescence.
Another cornerstone of the Grappe’s approach to parenting a child with chronic illness has been to empower Maggie to take responsibility for her own health. "We put her in charge of taking her medicine pretty early. And rather than taking things arbitrarily out of her diet, we’ve let her learn through experience what she can and can’t have."
"Being proactive with my medicine, knowing my boundaries and staying on top of that definitely helps," says Maggie. "I can’t eat everything I want to. If I am going to cheerleading practice, I’m definitely not going to eat pasta with white sauce. I’ve learned what not to eat over the years, for sure."
Shonda sees her daughter serving as an encouraging example for many kids who struggle with the challenging aspect of having Crohn’s, ulcerative colitis or IBD. "She’s not letting it hold her back," she says.
Far from holding her back, Maggie says that having a chronic condition has deepened her ability to reach out and empathize with others who may have hidden challenges, a trait that will serve her well in her intended vocational path – she hopes to follow her mom into a medical career.
"Most people don’t know I have Crohn’s. It’s not something I just go around telling people. So you never know what people have going on in their daily lives."