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Staying Out of the Hospital

Shenanndoah NormanShenanndoah Norman and her stomach don’t always get along. The seventeen year-old was diagnosed at the age of nine with Crohn’s disease, a chronic inflammatory bowel disease (IBD) that causes swelling in the lining of the digestive tract.

Since 2010, Shenanndoah has spent a lot of time in a hospital bed for everything from surgery to blood transfusions, to illnesses associated with her weaker immune system. But her team of care givers at McLane Children’s is working hard to keep her out of the hospital and her symptoms under control.

“We want our patients to spend as little time here as possible,” says Murali Jatla, MD, MBA, Shenanndoah’s gastroenterologist at McLane Children’s. “We want them to be out living their lives, so we do everything we can to keep them healthy.”

Crohn’s disease is not uncommon, affecting about 700,000 people in the United States, but is often misunderstood because symptoms aren’t readily visible and patients “look” healthy. However, it can cause severe abdominal pain, diarrhea, ulcers, fatigue, weight loss and even malnutrition. It is not known exactly what causes Crohn’s disease, although experts believe it is related to genetics and an abnormal immune system response.

There is no cure for Crohn’s disease, only different methods to treat the symptoms. Some types of treatment prevent inflammation by suppressing the immune system. Although this helped with her symptoms, Shenanndoah could no longer attend public schools because she could not fight off infections like other children her age, and would often need to visit the hospital for illnesses that were otherwise easily treatable. She now attends an online high school through Houston ISD. “It’s a very good thing for me,” she says. “I miss not being around other kids my age, but I definitely don’t miss getting sick all the time.”

Crohn’s disease also limits Shenanndoah’s ability to participate in activities typical of other teenagers. “I can’t do a lot of physical things like exercise,” she says. “I have to watch what I eat, and I’m more sickly and low on energy. My weight will fluctuate up or down by 20 pounds just within a few weeks.”

In 2016, Dr. Jatla suggested a new medication that would help treat her inflammatory symptoms but wouldn’t completely suppress her immune system. “He jumped through a bunch of hoops to get this medicine for me,” Shenanndoah says. “It hadn’t been approved for kids yet, much less for kids with Crohn’s, but he went that extra mile for me so I wouldn’t be so sick all the time, and it helped.”

Almost a year later, Shenanndoah only needs check-ups every six months and hasn’t needed to stay in the hospital once. “I’ve been in other larger hospitals, and they don’t feel as personal,” Shenanndoah says. “McLane Children’s has a community feel that I love, and you get to know the nurses and doctors.”

After her high school graduation, Shenanndoah plans to pursue a degree in child life therapy, hoping to help children like her who spend a lot of time in the hospital. “They did so much for me,” she says. “They’re really there for you while you’re in the hospital, and I want to be that person for someone else.”