Stories about: Midaortic Syndrome and Renovascular Hypertension (MAS/RVH) Program

‘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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Surgery to remove blood clot saves London’s kidneys

London, who had a large blood clot in her aorta, recovers after surgery.Todd and Lindsey Taylor had barely settled in at home in Syracuse, New York with their new baby, London, when their world turned upside down.

London, who had seemed perfectly healthy at birth, woke up nine days later vomiting and struggling to breathe. They rushed her to their local children’s hospital.

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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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Midaortic syndrome takes Arizona teen to Boston for innovative surgery

Justin Kibler is tall, strong and lean. At 18, he’s already a competitive rodeo star and an active member of Future Farmers of America (FFA). Looking at him, “he’s the picture of health.” But what can’t be seen, just by looking, is that just four years ago, Justin developed an extremely rare and dangerous disease called midaortic syndrome (MAS). And he needed special care that no one in his entire home state of Arizona could provide.

Midaortic syndrome is characterized by a narrowing of the parts of the aorta (the main artery that delivers oxygen-rich blood throughout the body), running through the chest and abdomen. MAS causes severe high blood pressure and can also significantly damage the brain, kidneys, intestines and limbs. Untreated, the disease is debilitating and life-threatening.

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