Mariah was in fifth grade when she began suffering from severe gastrointestinal issues. Extreme constipation caused near-constant hospital visits for nearly 10 months, and her stomach was so distended that she developed arthritis in her joints. No matter what she and her mother Whitney tried, nothing could alleviate her pain—until her pediatrician recommended she visit Lurie Children’s.
Mariah and her family traveled over 2,000 miles from their home in Oregon to meet with GI specialists at Lurie Children’s. Motility tests concluded that Mariah’s colon had stopped functioning. Doctors recommended she undergo an ileostomy, a procedure in which a loop of the small intestine is brought to the surface of the skin, as a temporary solution.
To help her prepare for the ileostomy, Child Life Specialist Brittany Smith spent time with Mariah discussing the surgery and answering any of Mariah’s questions. Brittany showed her photos of other children who with ileostomies and shared stories about ways that they coped with the procedure, like decorating their ostomy bags and naming their stomas (the place on the abdomen where the small intestine meets the skin).
From preparing to procedures to the recovery process, Brittany guided Mariah through every step. After her operation, Child Life played a major role in helping Mariah recover quickly. Brittany would take Mariah for walks on the unit and play games that required her to move. “After an ileostomy, we try to get kids moving so their bowels start working again,” Brittany explained.
Mariah had just the platform to share advice: her own YouTube channel. In videos she posts, she documents her experiences and shares her unique insights to educate the public at large and other children with conditions like hers. Brittany has supported this endeavor by filming Mariah as she performs some of her regular tasks, like inserting a nasogastric intubation (NG) tube, which extends from the nose through the throat and into the stomach. “She had been placing her own NG tube for years and was really excited to show that in the video,” Brittany said. “It was really important that we gave Mariah opportunities to still feel like Mariah.”
During Mariah’s regular visits to Lurie Children’s, Brittany helps minimize stress to help her stay healthy and strong. When Mariah had to spend a night in the hospital without her mother for the first time, Brittany made sure she felt at home. “She and I came up with a plan that detailed who would be on the unit throughout the night and a routine that felt similar to how she might spend a night in her own home. We talked to her nurse so they could get to know each other and went over things like how to find the ‘call’ light if she needed something.”
According to Whitney, her daughter has not only received life-changing medical care at Lurie Children’s but has also benefited from support services in the hospital tailored to treat her mind and spirit as well. “It was such an awesome, moving experience for us to be at Lurie Children’s and be taken care of.”
Today, Mariah is adjusting to life with an ileostomy bag and regularly travels to Chicago to see specialists at Lurie Children’s. Eventually, Mariah may need her colon removed—a possibility she has discussed with her team of experts.
“We don’t know when this will end,” Whitney said, “but we’re in good hands. Lurie Children’s is the best place to be.”