Stories about: Boston Children’s Motility and Functional Gastrointestinal Disorders Center

When transplant isn’t the only option

Ariana, who has pseudo-obstruction and was able to avoid an intestinal transplant, with her mom 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.

Read Full Story | Leave a Comment

Second opinion gives Tim a second chance for motility health

Baby Newborn and NurseTim’s first few weeks of life were hard, on both him and his parents.

Born with various medical concerns, including a lack of the sucking and swallowing reflex—the instinctual way babies know how to suck and swallow milk—he had a hard time getting all the nutrients he needed. To help him thrive he was fitted with a gastric feeding tube (G-tube) that delivered formula directly to his stomach. But even with his tube, Tim still had problems with severe reflux. It puzzled his local doctors and pained his parents who were at a loss as to how they could comfort their son.

“It’s heartbreaking to have a child in pain and not be able to do anything,” says Tim’s mother Stephanie. “You feel so powerless.”

Read Full Story | Leave a Comment