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Novel procedure lets 14-year-old with heart defect be a kid

Eighth-grader Jason Long gets to be just like the other kids. He can run, play badminton, shoot baskets and have Airsoft fights and target practices with his friends.

He is fortunate, recently dodging a third open-heart surgery since he was born 14 years ago with a congenital heart defect.

A month ago, Dr. Carl Garabedian used a new catheter procedure to insert a replacement valve in Jason’s heart. It is one of the first noninvasive heart valve surgeries performed in the country and ushers in an era of less risky, less painful procedures with quicker recovery times for eligible patients throughout the region.

Consider Jason’s ordeal. He arrived at the Providence Sacred Heart Medical Center at 5:30 a.m. Feb. 28 for his surgery. After about four hours he was sent to recovery.

By 1:30 the next afternoon he was heading home.

“My leg hurt where they made the incision,” he said. “And I guess there was a dull deep pain in my chest.”

After two more days resting at home, Jason attended a half-day at Horizon Middle School in Spokane Valley.

His friends know there’s something wrong with his heart, but it makes no difference.

“I think his scars are kind of cool,” said friend Andy Jackson.

He has since participated in gym class, walks home by himself every day and doesn’t talk much about his heart.

“Jason is just one of those kids who gives it his all,” said physical education teacher Bill Knudson. “He knows his limits but sometimes wants to do more than he should.

“I’ve had to tell him, ‘Don’t put yourself in a position where I’m going to have to call the paramedics.’ ”

During class this week Jason participated in a badminton tournament and worked hard enough to soak the collar of his gray T-shirt.

When he runs a mile, he doesn’t want to walk, so he finds the right pace and sticks with it until he finishes, Knudson said.

“He can continue being a normal kid,” said Garabedian, with one caveat: “We do know that he will need future procedures on that pulmonary valve.”

Most patients who have had pulmonary valve problems undergo multiple open-heart surgeries, each one riskier and more difficult that the last.

The new procedure, invented by renowned cardiac surgeon Dr. Philipp Bonhoeffer, changes everything.

The German-born physician, whose family led resistance efforts against the Nazi regime during World War II, is now the chief pediatric cardiologist at Great Ormond Street Hospital in London.

He is a violin virtuoso, hence the name of his Melody Transcatheter Pulmonary Valve procedure.

Garabedian made a small incision in Jason’s leg, inserted a catheter into a large vein and fed the device to his heart.

The catheter delivered a bovine jugular vein – “a cow vein,” as Garabedian puts it – enclosed in a large stent.

After the stent is in place, the new valve is seated and begins to work.

It’s a fitting development for patients who had faced a lifetime of heart surgeries.

Jason’s first surgery came at 5 weeks old.

He weighed 9 pounds, 1 ounce at birth. The next morning, as his mother, Bonnie Long, recovered from the cesarean section, a cardiologist called. Nurses had detected a murmur in Jason’s heart, and further tests revealed he had a heart defect called truncus arteriosis.

The first surgery was done by Dr. Leland Sewick.

Jason’s second open-heart surgery was at age 3.

He was able to enjoy the kind of boyhood any parents wants for their son, full of running and playing and mischief, said Bonnie.

Then about a year ago Jason began to slow down again and the Longs were faced with a third open-heart surgery.

“We were worried,” said Bonnie, who works as a labor and delivery nurse at Valley Hospital and Medical Center, “but we were aware that something would need to be done.”

They were thrilled to learn about the Melody procedure and said Garabedian worked with them to overcome insurance obstacles, including a reluctance to cover a treatment that, while approved by federal regulators, was still considered experimental when it came to coverage policies.

The family persevered, and now Bonnie can envision Jason flourishing at University High School next year and pursuing whatever he wishes in the future.

The Longs received an insurance statement showing the cost of the procedure was $152,000. They will pay a small deductible for their part.

An open-heart surgery and resulting hospital stay would have easily surpassed that, Bonnie said.

Garabedian has since performed the procedure on several other patients and wants others with heart valve problems to know there are alternatives to open-heart surgeries.

“There are lots of people who can benefit from this procedure,” he said. “We hope to reach them.”


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