Stories about: home parenteral nutrition

Worth the fight: Finding care for short bowel syndrome

smiling baby with short bowel syndrome
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

When Hannah Lillie meets someone new, she’s likely to smile and blow them a big kiss. The friendly, wide-eyed toddler loves being the center of attention — but when she was just 3 weeks old, she and her parents, Layne and Ryan, found themselves in the middle of a medical whirlwind they could never have expected. When she suddenly began vomiting and turning blue during a routine feeding, her parents rushed to their local emergency department.

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HPN helps football fan thrive

Rithvik has his blood pressure tested at an HPN appointment
PHOTOS: SOPHIE FABBRI/BOSTON CHILDREN’S HOSPITAL

At 13, Rithvik Kottapalli isn’t just a New England Patriots fan — he’s been a passionate devotee since he was a toddler. “He started young,” laughs his mother, Lakshmi. The boy’s adoration even buoyed him along after he experienced a major stroke four years ago. As he recovered at Boston Children’s Hospital, “He couldn’t remember his own name,” says Lakshmi. “He didn’t know that I was his mom.”

Yet when a clinician asked him who his favorite Pats player was, Rithvik had an answer right away. “[Rob] Gronkowsi,” he murmured — twice.

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Persevering after the unimaginable: Jacob’s journey with short bowel syndrome

little boy after treatment for short bowel syndrome

Yankees or Red Sox? Giants or Patriots? Rangers or Bruins? Seven-year-old Jacob Hersko and his physician, Dr. Christopher Duggan, may playfully debate whose hometown is better, but in one area, it’s clear that Boston comes out on top: “Jacob loves coming to Boston Children’s Hospital,” says his mother, Rachel. “He says it’s like going to Disney World.”

When she was pregnant with Jacob, Rachel and her husband, Geoff, never anticipated that they would be traveling to Boston every few months. The little boy was born at full-term, with no apparent complications. But when he was just a week old, the unimaginable happened: He was diagnosed with necrotizing enterocolitis (NEC), a serious intestinal illness in babies that results in the death of intestinal tissues.

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Care for short bowel syndrome helps Ellie enjoy being a kid

treatment for short bowel syndrome at Boston Children's
Ellie and her dad, Gib

It’s a Thursday afternoon and Ellie Brogan is bubbling over with energy, greeting old friends and waving at others as they walk by. The 11-year-old, says her father, Gib, is “raring to go.” She’s a Girl Scout, plays viola and is in the cast of her school play, but today’s appointment is no typical afterschool activity. Instead, Ellie and her dad are paying their monthly visit to the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital.

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