Kami Sutton_recovering at homeIt was never supposed to be a simple procedure. After all, Kami Sutton had been born with an impressive list of congenital heart defects that had already required 19 surgeries for the 26-year-old. Now it was time for No. 20.

The plan was to give Sutton a new pacemaker, an upgrade to a more high-tech version that would send electrical impulses to her heart’s two lower pumping chambers, allowing them to beat simultaneously — a synchronicity that would help her failing heart to function more efficiently.

Doctors spent eight hours navigating Sutton’s complex heart anatomy only to find that the vein where the pacemaker wire is typically placed did not exist on her unique heart.

“I’m taking it better than anybody,” said Sutton, who joked about looking like a swollen Oompa Loompa after the surgery in late March. “I knew there was a possibility it might not work.”

Sutton’s doctors spent several months practicing the noninvasive procedure on a 3-D-printed replica of her heart. But the 3-D model, while anatomically correct, did not account for the heart’s awkward positioning in her body. Sutton has a curved spine, or scoliosis, which changes the angle in which the blood vessels enter her heart.

But even after doctors successfully maneuvered the twists and turns, they discovered Sutton’s abnormal vein anatomy.

“If the road isn’t built, it’s hard to get there,” said Kristen Patton, M.D., an electrophysiologist at the University of Washington Medical Center and one of Sutton’s doctors.

Stephen Seslar, M.D., one of Sutton’s doctors from Seattle Children’s Hospital, said specialists in surgery, heart failure, cardiology and electrophysiology gathered a couple days after the procedure to discuss the next step.

The so-called biventricular pacemaker is still an option, Seslar said. But finding a good spot to place the pacemaker wire would require a more invasive — and therefore risky — procedure.

“Each time they go in, they’re learning something new,” said Sutton. “They’re learning how they need to change their approach next time. That helps not only me, but also other patients in the future.”

One such lesson, Seslar said, would be to print a more extensive 3-D model when planning heart surgeries for patients like Sutton with severe scoliosis.

“We could build not just the heart in isolation, but the heart as it is held in the chest, maybe even reproducing the spine and the [surrounding structures in the chest] so that we experience the same constraints in terms of the real-life orientation of the heart,” he said.

But for Sutton, the best strategy for now may be to do nothing, Seslar said.

“Kami happens to be doing quite well,” he said. “Maybe we hold off on another procedure and wait until there’s a more pressing need.”

He hopes by then, a newer, better technology may exist.

“A failure in the present day does not mean in two or three years we won’t have another way of dealing with this problem that is substantially better,” said Seslar.

A week after the procedure, Sutton was back at work at the American Heart Association’s affiliate in Seattle, where she coordinates grassroots advocacy efforts.

“I’m not disappointed the procedure didn’t work,” said Sutton. “We’ll just try something else. At least it’s not over.”

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Photo courtesy of Kami Sutton