Stories about: Midaortic Syndrome and Renovascular Hypertension Center

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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In the nick of time: Kayley’s life-saving treatment for midaortic syndrome

teenager with midaortic syndrome
PHOTOS: COURTESY OF THE ESTEVES FAMILY

At 10, Kayley Esteves could often be found on the soccer field, dribbling a ball up and down the grass. She seemed the picture of health, but when she started experiencing chest pains, her mother, Sue, brought her to their local hospital. An initial chest x-ray revealed nothing. “But something still didn’t seem right,” remembers Sue. She made an appointment with a cardiologist at Boston Children’s Hospital, where Kayley had previously received care.

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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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