Stories about: Dr. Diego Porras

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.

Read Full Story | Leave a Comment