When transplant isn ’t the only option
Nine-year-old Ariana Dufane is happiest when she’s tumbling, whether she’s launching herself off the ground for a cartwheel or practicing how to perform the perfect split. In that moment, the fourth-grader focuses on nothing but strength and balance, a skill she has refined, not just in gymnastics but in life. Born with intestinal pseudo-obstruction — a disorder of abnormal intestinal motility function that may cause the body to go into intestinal failure — Ariana’s first few months were spent in and out of emergency rooms. Her symptoms began with a distended belly and an inability to have a bowel movement. “I could tell she was in horrible pain and I didn’t know why,” says Ariana’s mom, Lisandy Jimenez. “She would cry and break out in a sweat.” Lisandy tried everything — removing milk from Ariana’s diet, a special formula, antibiotics and other medications. When the options ran out, she took Ariana to a gastrointestinal specialist near their home in Stamford, Connecticut. And, when he ran out of options, she traveled to a major medical center in Philadelphia. “That’s when we got the diagnosis that it was pseudo-obstruction,” Lisandy says. Ariana had multiple ostomies, a surgical opening made in the skin as a way for waste products to leave the body, and a gastrostomy, a surgical opening into the stomach for a feeding device insertion. “We were there for nearly three years, often three months at a time,” says Lisandy. “They no longer...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories Boston Children's Motility and Functional Gastrointestinal Disorders Center Colorectal and Pelvic Malformation Center Intestinal and Multivisceral Transplant Program intestinal transplant Leonel Rodriguez pseudo-obstruc Source Type: news
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