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.

“Kenslie developed flu-like symptoms on a Friday morning,” Lori says. “I took her to the doctor and came away with some prescriptions, but things got worse that night. On Saturday, we went to a pediatrician’s office that holds weekend hours, and the doctor there said her heart looked like it had a virus.” Kenslie was quickly admitted to the local hospital where doctors told Lori her daughter’s heart was functioning at 7 percent capacity.

“They said her heart rate and blood pressure were both very high,” says Lori, “so she was flown to MUSC [Medical University of South Carolina] in Charleston by helicopter.”

Kenslie stayed at MUSC for a few days. She was critically ill, requiring a breathing tube and multiple intravenous medications to control her blood pressure and support her failing heart. Then, her kidneys failed, and she needed dialysis. A CAT scan revealed a narrowed aorta as the cause of Kenslie’s problems.

Midaortic syndrome: A multi-system problem

Kenslie had a rare vascular problem called midaortic syndrome, or MAS. MAS is characterized by a narrowing of the mid-aorta and causes severe high blood pressure. It can also significantly damage the brain, kidneys, intestines and limbs. Untreated, MAS is debilitating and life-threatening.

The doctors at MUSC knew of Boston Children’s MAS and Renovascular Hypertension (MAS/RH) Program, so they consulted with clinicians there and decided to transfer Kenslie to Boston.

As Calvin and Kenslie flew to Boston on February 16, Lori stayed behind, and baby Hollis made his world debut.

Within 24 hours of Kenslie’s arrival in Boston, Cardiologist-in-Chief James Lock, MD, performed a cardiac catheterization on the toddler. He inserted a flexible tube into her heart to dilate her aorta, place a stent inside and re-establish blood flow to her good kidney.

Because MAS affects many of the body’s systems, each patient’s care requires a diverse group of specialists. The MAS/RH Program includes representatives from cardiology, interventional cardiology, nephrologygeneral pediatric surgeryinterventional radiologygenetics and rheumatology. This model allows for treatment plans based on each member’s expertise.

While Kenslie needed to be closely monitored as she recovered, there was no question that the intervention was a success. “We trusted everyone here,” Lori says of her daughter’s care team, which also included cardiologist Diego Porras, MD, and kidney and liver surgeon Heung Bae Kim, MD. “Everyone has taken great care of us,” she says. “We had a lot of faith in them. That’s what got us through.”

Kenslie and baby chick!Recovery in Boston and beyond

Not more than a week after the procedure, Lori, baby Hollis and Kenslie’s sisters Hallie and Sierra made the 23-hour drive north to join Calvin and Kenslie. “I felt so sad that Kenslie missed seeing Hollis right after he was born. When I arrived in Boston, I laid Hollis down next to her in her hospital bed, and her face just lit up,” Lori continues. “She bent down and gave him a kiss…it was such a beautiful moment.”

Kenslie spent the next seven weeks under close surveillance at Boston Children’s. She enjoyed going for stroller walks with her father, playing games and watching a special dog show on St. Patrick’s Day. She also loved being with her new baby brother and “helping” her mom take care of him.

According to Lori, Kenslie has always been resilient. “She’s wild. She climbs everything, from a stool to a chair to the counter; she’s just all over the place. She’s been a fighter from the beginning, and I think that’s what helped her get through this.”

When the family returned to their South Carolina home, they had visitors all afternoon. Friends and family in the community had been praying for Kenslie all along and were thrilled to welcome her back, healthy and happy.

While Kenslie may need another intervention in the future, she is making great progress. The team at Boston Children’s maintains close contact with her local physicians and her parents.

“Kenslie is as busy as ever, and it’s like nothing ever happened,” Lori says. “We are just so thankful.”

Learn about Boston Children’s Interventional Catheterization Program.