Stories about: midaortic syndrome

The mighty Quinn: What it’s like to have midaortic syndrome

little boy with midaortic syndrome waits in his doctor's office
PHOTOS: SOPHIE FABBRI/BOSTON CHILDREN’S HOSPITAL

My name is Quinn and I’m 9 years old. When I was younger, my doctors noticed that my blood pressure was really high — and little kids shouldn’t have high blood pressure. My mom and dad took me to our hospital here in Utah and we found out that I have a really rare condition called midaortic syndrome. That means one of the tubes connected to my heart is too narrow.

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Making the decision: Choosing MAGIC for midaortic syndrome

PHOTO COURTESY OF THE RICE FAMILY/PHOTOS BELOW BY SOPHIE FABBRI AT BOSTON CHILDREN’S HOSPITAL

Several years ago, the Rice family wouldn’t have imagined that they would be traveling some 2,000 miles across the country for care. But after their youngest son, Quinn, was diagnosed with midaortic syndrome, they knew they had to make the trip. In this rare but serious condition, the part of the aorta (the heart’s largest blood vessel) that runs through the chest and abdomen is narrow, leading to reduced blood flow. Midaortic syndrome can cause dangerously high blood pressure and can be life threatening if left untreated.

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‘She’s a fighter’: Nora’s amazing recovery from surgery for midaortic syndrome

Nora underwent MAGIC for midaortic syndrome

It’s an unseasonably warm February day, and 4-year-old Nora is enjoying the fresh air, immersed in an intense game of “Mother May I?” She’s in the lead, but her friend Jonette Jean-Louis is catching up.

“Nora, you may take four ‘Single Ladies’ steps,” advises Linda Pengeroth. After asking permission, the little girl gleefully skips forward, waving her raised hand in homage to the iconic Beyoncé video. “I won!” she exclaims as she crosses the finish line, a wide smile spreading across her face.

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Second opinion for midaortic syndrome gives Cameron a second chance

midaortic syndrome

Cameron Grubb likes to shoot Nerf guns, and even his own doctors aren’t immune from his aim — in fact, they often fire back. It’s a playful act that everyone welcomes, however, particularly since this 6-year-old has defied the odds multiple times in his young life.

Just three years ago, Cameron was struggling to survive after being diagnosed with extremely high blood pressure — so elevated, in fact, that his clinicians in Kansas thought the monitor must be broken. When they eventually confirmed the reading, it was 170/140, a dangerous level that sent him to the local intensive care unit for nine days.

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