Rare procedure helping teen beat the odds

November 21, 2016  //  FOUND IN: Michigan Medicine News,

John-Daniel Johnson keeps overcoming the odds.

Sixteen years ago, he was a preemie missing two of the left chambers of his heart and had to undergo multiple operations.

Now, the North Carolina teenager is back to swimming and riding dirt bikes after a minimally invasive heart procedure this summer, which allowed him to avoid an open-heart surgery. It was the first of its kind conducted on someone his age at the U-M Frankel Cardiovascular Center.

A long journey

Back in 2000, when Lisa Johnson was told one of the twins she was carrying had a congenital heart defect called hypoplastic left heart syndrome, she and her husband Bill started making plans.

“[The cardiologist] gave us three options: the first option was to hold him and let him die, the second option was a heart transplant and the third option was a series of three surgeries,” she said.

After selecting the third option, the parents-to-be made plans to come to UMHS for the twins’ birth, where they quickly bonded with the doctors and nurses. John-Daniel and Danielle each weighed less than four pounds when they were born several weeks early.

“He’s a fighter and has been since Day One, which is exactly why he’s here today,” Lisa said. Within 18 months of his birth, John-Daniel would be recovering from procedure No. 3.

Future trips would bring more relatives and even their pastor up to Ann Arbor to support the Johnson family.

“After the third surgery, we went home and things were going well for a very good long time,” Bill said. A large portion of their interaction with health care workers became social and they even started taking family vacations with one of their former nurses.

Thinking creatively

But in the past year, when their vibrant 16-year-old son didn’t seem to have the same energy as before, the Johnsons wondered if something wasn’t quite right. Turns out, John-Daniel’s aortic valve was leaking.

The adult and pediatric specialists at UMHS put their heads together and came up with something unique to try.

TAVR, or transcatheter aortic valve replacement, is typically a procedure for older adults. It’s usually used as an alternative to open heart surgery for severe aortic stenosis. The CVC has performed more than 700 of these procedures, but not on teenagers like John-Daniel or as a typical treatment for a leaky valve. But the procedure was a success.

“Almost instantaneously, his oxygen level rose,” said Ronald Grifka, M.D., John-Daniel’s cardiologist at U-M’s C.S. Mott Children’s Hospital.

Twin connection

After a few weeks of recovery and getting his energy back, John-Daniel didn’t want to miss a second of supporting his twin sister, who is always right there in the hospital room supporting him. She’s a country singer, and whether it’s to Ann Arbor or Nashville, the family of four makes every trip as a unit.

“We’re best friends and we always hang out together,” Danielle said. “It’s amazing.”

The family hit the road this fall so Danielle could work on her new song, called “Hero,” honoring her brother’s strength.

“Every time, he turns around like a champ,” she said.

For more stories like this one, check out the Michigan Health blog

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