Health & Wellness

Belmar Teen Battling Rare and Puzzling Digestive Condition Seeks Answers at Children's Hospital of Philadelphia

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Diagnosed with a rare digestive disorder, Shayla Keefe, 17, hopes to get answers from specialists at Children’s Hospital of Philadelphia as to what has caused her to lose 80 pounds since March 2016. Credits: Shayla Keefe
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BELMAR, NJ — Shayla Keefe says she does what she can to be a “normal teenager.” That means going to the beach, working to save money for college, and enjoying time with family and friends.

But most of the time, that is not possible for the 17-year-old, who has symptoms of superior mesenteric artery syndrome (SMAS) — a rare condition that occurs when the first part of the small intestine is compressed between two arteries, causing a blockage that prevents food from passing through the digestive system, according to the National Institutes of Health.

For Shayla, these symptoms include the inability to eat without vomiting, severe bouts of nausea, and extreme abdominal pain and bloating when she is able to keep food down. Shayla is receiving nutrients though a feeding tube inserted in her abdomen, but said she continues to lose weight — dropping a total of 80 pounds since March 2016.

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“I just can’t eat. Everything sits in my stomach,” she said. “I have cravings, but I don’t have an appetite, Everything I eat, I throw up. Every week I seem to lose more weight.”

After she began experiencing what she thought was a stomach bug last March, Shayla said her condition continued to worsen. Since then, she has been to numerous doctors who have diagnosed with a number of conditions. But it wasn’t until she was referred to the Buerger Center for Advanced Pediatric Care at Children’s Hospital of Philadelphia (CHOP) that she said she was diagnosed with SMAS.

While Shayla has undergone gastrointestinal (GI) testing at that specialized facility with no conclusive results yet of what’s causing her condition, Shayla said a motility specialist at CHOP’s Suzi and Scott Lustgarten Center for GI Motility has agreed to take her case. Her first appointment is scheduled for September 5.

Getting an accurate diagnosis for a GI disorder is a long and challenging process, before doctors even begin to explore the right treatment, according to the center. And GI motility specifically involves the movement of muscles and chemicals in the esophagus, stomach and intestines during ingestion and digestion of food. A variety of factors can disrupt the normal function and coordination of this complex system, leading to malnutrition and chronic pain.

While Shayla anxiously awaits her upcoming visit to CHOP, she said she needs to gain weight so that additional testing can be performed at that time — a task that is not so simple for her.

“I feed for 20 hours a day (through the feeding tube) and it just makes me sick to my stomach. I don't get much sleep at night and just push through most of my days,” Shayla wrote in a post on the GoFundMe page she created to raise money to help her family pay for her medical costs not covered by insurance and travel expenses to CHOP.

Because of her condition, she said she has been unable to keep regular schedules at her two jobs, and her mother also often misses work to take her to her appointments, putting an additional financial strain on the family, she said.  “I feel like I’m a burden. I feel bad putting my family through this,” she said.

However, Shayla continues to stay positive and is optimistic that doctors will find the cause of her condition. She’s also found SMAS and feeding tube support groups for teens on social media, which has helped her along this journey.

She looks forward to being a senior at Manasquan High School this school year and looks even farther ahead to college. “I want to have a good college life,” she said. “I have a lot of goals in my life.” And one of those is to become a veterinarian.

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