Stories about: home parenteral nutrition

Isaac’s story: A ‘new normal’ with short bowel syndrome

Isaac stays active with short bowel syndrome

It was the morning after their baby son Isaac had come home from the hospital, and Jennifer and Brian Campbell were performing the same sweet act of bonding as many new parents: giving him a bath in the sink. But as they maneuvered around the room, they suddenly realized something was very wrong. “I fell to the floor and started screaming and crying as formula shot out of his stomach,” remembers Jennifer. “I thought we’d broken him.”

The reality, of course, was that the Campbells were simply adjusting to their new “normal” — something any parent of a medically complex child can understand. Isaac wasn’t a newborn. He had finally been discharged from the hospital after nine months. And his parents hadn’t hurt him. They’d just accidentally pulled out his gastrostomy (G-tube), which provided his body with nutritional support.

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Parent-to-parent: Tips for Home Parenteral Nutrition families

Toddler using parenteral nutrition smiles while making bird house

Four-year-old Thomas Onorato is a young zoologist at heart. Often seen with binoculars in hand, the adventurous preschooler is particularly drawn to bird watching. He enjoys talking about his feathery friends and studying their beauty and habitat.

Thomas’ love of animals runs so deep that he says he wants to be a veterinarian when he grows up. “Thomas is obsessed with animals. It’s his love,” says his mother, Melissa.

Beyond his quest to care for animals, Thomas has two other important missions — to manage the rare condition, microvillus inclusion disease (MVID) and receive the lifesaving parenteral nutrition (PN) support he needs to grow and thrive.

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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.

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Making connections: Bonded by short bowel syndrome

care for short bowel syndrome

At the top of the dual slide, 4-year-old Brayden Austin is buzzing with energy, excited to go careening down to the bottom. Yet he waits patiently until a towheaded boy joins him on the neighboring chute. Two-year-old Camden Glover is a little nervous. But Brayden grabs his hand and the pair sails to the ground together, squealing with delight.

It’s a typical playground scene, but also an apt metaphor for the boys’ special connection. The two children — one from Maine, one from Tennessee — have a close friendship. But they might never have met if not for one life-threatening event.

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