March 30, 2013

Heart pump allows girl, 13, to resume normal activities

Kyah DeSimone is the first patient at Boston Children's Hospital ever to be implanted with the device.

By CYNTHIA MCCORMICK Cape Cod Times

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In this March 5, 2013 photo, Kyah DeSimone holds a version of the heart pump which was implanted in her at Children's Hospital in Boston in November 2012. After heart failure, the eighth-grader from West Yarmouth, Mass., became the first patient at the hospital to be implanted with a heart pump small and portable enough to restore her to normal life while she waits for a transplant. (AP Photo/Cape Cod Times, Steve Heaslip)

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In this March 5, 2013 photo, cardiologist Christina VanderPluym listens to the heart pump which was implanted into Kyah DeSimone at Children's Hospital in Boston in November 2012. After heart failure, the eighth-grader from West Yarmouth, Mass., became the first patient at the hospital to be implanted with a heart pump small and portable enough to restore her to normal life while she waits for a transplant. (AP Photo/Cape Cod Times, Steve Heaslip)

And the team effort didn't stop in the OR - VanderPluym and Children's Hospital cardiology nurse coordinator Beth Millian traveled to Yarmouth to educate police, fire and school officials as well as members of a local nursing team about Kyah's heart device.

The continuous flow of the pump means the child doesn't have a regular pulse, so emergency officials needed to know they don't need to start CPR if Kyah is conscious, VanderPluym said.

First responders came up with a plan to transport Kyah to Cape Cod Hospital in the event of a power failure - which they did during the February blizzard.

VanderPluym also met with students in Kyah's STEM (science, technology, math and engineering) class and let them handle a model of the HeartWare device.

It's important to dispel mystique around the device, she said.

"I was kind of embarrassed and nervous, but it was fine afterward," Kyah said.

She wears the black bag that carries the device's controller and battery over her shoulder like a purse.

The wire that powers the ventricular assist device goes from the controller, about the size of a cable box, into her body through a hole in her abdomen.

At night the device is plugged into an electrical socket to save the juice in the batteries. And day or night Kyah makes sure her little brother, 6-year-old Jaedan, doesn't accidentally yank the device's drive line out.

"Kyah honestly amazed us at how quickly she picked it up," Millian said. "She wanted to learn."

Even when her daughter was deathly ill, she was determined to get better, Danielle DeSimone said. "She kept telling me to 'think positive, mom."'

"I just felt like God has plans for you," Kyah said. "I don't really remember a lot of things. But I felt like I would be OK."

Carrying around the device sometimes "feels weird," Kyah said. "I'm glad I have it because it saved my life."

Created by a company in Framingham, the HeartWare ventricular assist device is associated with fewer heart attacks and strokes than the Berlin Heart, VanderPluym said.

"There's no time limit on it," she said. She said in Europe people have lived on it for several years.

But the goal, especially for a young person like Kyah, is ultimately a heart transplant, VanderPluym said. "This is the safest way to get them to transplant when their heart (condition) is so severe. We call it a bridge to transplant."

Nearly two dozen other children in the U.S. have been implanted with the device - including one other child at Children's Hospital since Kyah's surgery - but the West Yarmouth teen is the first to return to school, VanderPluym said.

She said the other patients are too young, too sick or are being tutored at home.

Kyah, who got A's and B's before she ended up in the hospital, hopes to get back to class full time soon.

"I miss it a lot," said Kyah, who wore a heart pendant and heart bracelet during a checkup at Children's Hospital on Tuesday. "I like school."

 

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