Strong-willed and resilient in the face of a rare GI disorder

Seven-year-old Gracyn was born with chronic intestinal pseudo-obstruction (CIPO), a condition so rare that only about 100 kids in the U.S. are diagnosed with it each year. Not only is it a very rare gastrointestinal disorder, it’s also very difficult to diagnose. Gracyn’s early months were filled with doctor’s appointments, tests and x-rays as doctors worked to understand what was going on. Those months were also filled with lots of worry for her parents.

“It was really hard and kind of traumatizing, to be honest,” said Gracyn’s mom, Sherry. 

CIPO means that the nerves and muscles in Gracyn’s intestines don’t work properly, preventing food, fluids and air from moving through her body. Following birth, Gracyn struggled to eat and failed to gain weight. At four weeks old, “her stomach was so bloated, you could see her veins,” Sherry remembered. Gracyn’s pediatrician referred her to Connecticut Children’s.

She needed an ileostomy, a surgical procedure that allowed her intestines to drain into a pouch on the outside of her body. Christine Finck, MD, Surgeon-in-Chief at Connecticut Children’s performed the surgery. “It made such a huge difference,” said Sherry. “The quality of her life changed tremendously.”

A lifelong disorder with no clear cause

Gracyn will likely have CIPO for the rest of her life, and no one can say why. Genetic testing turned up no definitive answer, and her medical challenges were far from over. Ordinary illnesses were more serious when Gracyn caught them, often landing her in the hospital to recover. In 2020, Dr. Finck placed a gastrostomy tube (G-tube) into Gracyn’s stomach to help with feeding and to ensure that her body can absorb the nutrients she needs. 

Although she has been hospitalized more than 20 times, Gracyn remains a spirited and spunky personality. “She is so strong and so resilient. And she is just so happy,” said Sherry. 

A big smile and a bigger sense of humor

Gracyn’s comfort level with doctors and nurses is high, and it shows in her sense of humor. She’s been known to prank the nurses on MS-6 (one of the medical-surgical floors). When they aren’t being pranked, the nurses are teaching Gracyn how to take charge of her own care by taking her medications properly and changing her ileostomy bags. “She knows how to do it all,” said Sherry.

It’s also no surprise that she’s interested in medicine. When she’s not playing doctor with her dolls or catching an episode of Grey’s Anatomy, she enjoys arts and crafts and hanging out with her family’s two dogs. Her big smile and penchant for fun are still a regular presence when she comes to Connecticut Children’s for follow-up care with Dr. Finck and gastroenterologist Corey Baker, MD, Director of the Center for Neurogastroenterology and Motility Disorders.