Stories about: volvulus

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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Focused on Faysal: From Saudi Arabia to Boston for reconnection surgery

reconnection surgery for volvulus

It began as a fun, relaxing trip. In 2016, the Alwosaifers were visiting Massachusetts from their home country of Saudi Arabia. It should have been an idyllic summer vacation — but then their youngest child, Faysal, got sick. What started as a stomachache soon worsened until the 12-year-old collapsed with severe abdominal pain.

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Whatever it takes: Fighting for Michael

Michael doesn't let short bowel syndrome keep him from enjoying sports

Michael stood at the top of the hill, staring down at the glittering white snow. The prospect of skiing to the bottom was scary — on previous trips, he’d refused to try, worried that he would fall. But this time was different. He was ready to take a chance. Attempting to balance without using poles, he pushed himself forward and glided through the powder as his family cheered him on. By the end of the day, the 8-year-old had sailed down the slopes five times, all by himself.

The accomplishment was even more meaningful for his parents, Bill and Lisa Smith, who have watched him fight to survive — and thrive — since he was an infant. “He had some issues with spitting up and turning blue and was diagnosed with acid reflux when he was about a month old,” says Bill. “But we had suspicions that something else was wrong.”

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Reena’s story: A bright future with short bowel syndrome

Reena doesn't let short bowel syndrome define her.

She’s just 16, but Reena Zuckerman knows exactly what she wants to be doing in another 10 years. “My dream is to play on the press team in the annual Women’s Congressional Softball Game,” says the aspiring political journalist. Since 2009, the event has pitted members of Congress against the press corps, raising nearly a million dollars for charity. “When I’m not doing schoolwork or watching TV, I’m listening to political podcasts and NPR,” Reena confesses.

It’s an impressive goal, but one that’s no doubt attainable for this driven teen, who’s been pushing herself to defy expectations since she was a baby. Her accomplishments are all the more remarkable considering that she was born with a serious gastrointestinal condition.

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