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

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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Catching up with Kenslie: Life after midaortic syndrome surgery

Kenslie who had mid-aortic syndrome

We last saw Kenslie Shealy in the spring of 2015, as she was settling back into life at home in South Carolina after a long stay at Boston Children’s Hospital. Kenslie, now 4, had emergency surgery for midaortic syndrome (MAS), a rare condition that affects the heart and kidneys. Untreated, the condition can lead to damage in the brain, intestines and limbs.

At Boston Children’s, Kenslie’s multi-disciplinary team included specialists in cardiology, interventional cardiology, nephrology, transplant and vascular surgery, interventional radiologygenetics and rheumatology.

She recovered well after her first surgery, performed by kidney and liver surgeon Dr. Heung Bae Kim, but her parents, Lori and Calvin, knew she wasn’t “out of the woods” quite yet. Kenslie would eventually need a follow-up surgery to further expand her aorta. She needed to grow a bit more first, so her doctors didn’t set a date for her second procedure.

“They thought she was going to have to wait longer, until she was about 7 or 10 years old, but she’s already outgrowing the stents they put in last winter,” says Lori. “So they scheduled her for September. It’s a good sign. It means she’s healthy, developing well and was ready for it before they thought she would be.”

This summer, while Kenslie played outside and swam as much as possible, her parents planned for what they hoped will be their last multi-week stay in Boston for some time.

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Kenslie’s story: A new brother and a new chance at life

Kenslie and Hollis sleeping

February was a very busy month for the Shealy family from Lexington, South Carolina. Lori and Calvin were expecting the family’s fourth child. Their daughter Kenslie, 2, was ecstatic at the thought of a new baby brother.

“When I was pregnant with Hollis, Kenslie kept asking when he was coming,” Lori says. “She’d say, ‘Mommy, can you just open up your belly? I want to see him.’”

But Kenslie missed meeting Hollis the day he was born.

Instead, she and Calvin were nearly 1,000 miles from home at Boston Children’s Hospital, where Kenslie, who had been diagnosed with midaortic syndrome, was battling for her life. The topsy-turvy month began with symptoms of the flu.

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