Stories from the transplant journey

Erin, a heart recipient, kisses her fiance
PHOTO COURTESY OF ERIN

On April 11, transplant recipients and their families gathered at Boston Children’s Hospital to speak about their transplant journeys during a special nursing grand rounds. As Donate Life Month draws to a close, we share excerpts from their stories, made possible #becauseofadonor.

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Support for midaortic syndrome: Christopher’s story

boy with midaortic syndrome
PHOTOS: COURTESY OF THE HUGHES FAMILY.

Lori Hughes wants people to know about midaortic syndrome. She talks to friends, family and teachers, and even runs a private Facebook group called MAS Kids for families dealing with this rare condition. “I remember how I felt 10 years ago,” she says. “It’s good for parents to be able to share their stories and connect with each other.”

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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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Reflux in babies: Four things to know

mother holding baby with reflux
PHOTO: ADOBE STOCK

Most adults are familiar with gastroesophageal reflux, or the movement of stomach contents up into the esophagus. For us, reflux is usually caused by lifestyle choices, such as eating heavy, fatty foods, smoking or drinking too much coffee. In grownups, unmistakable symptoms like heartburn and burping are signs of acid reflux.

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