Saturday 25 Oct 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

STORIES FROM THE HEART: ‘Courageous Katherine’ thrives on helping fellow heart patients

Published: 9:00 am CDT, January 16, 2014

In her 13 years, Katherine Schroeder has undergone 15 surgeries or other procedures on her heart. And she still faces a lifetime of medical interventions to keep her heart running.

Persevering is tough. Persevering with a good attitude is even tougher.

That’s why this eighth-grader from Canton, Ohio, is so remarkable.

Katherine has a positive approach and wants other kids with heart disease to share it. The more limitations she’s faced, the more she’s looked for opportunities to help her peers.

“I try to put them at ease and help them understand there’s a way to get through it,” she said. “I tried to find things that are good about my condition, like being able to raise money for the American Heart Association and meeting lots of people, rather than just focusing on what I can’t do.”

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Katherine was 3 weeks old when doctors discovered how ill she was. They found a hole in her heart, a faulty mitral valve and a dangerous narrowing of her aorta.

Doctors first used a balloon angioplasty to try expanding the narrowed part of her aorta, hoping it would ease her symptoms and allow her to get stronger before undergoing other, more-intensive surgeries.

Over the next few weeks, she wasn’t putting on weight as quickly as doctors hoped. So she underwent the next operation, this one to patch the hole in her heart and to try repairing the mitral valve.

“We almost lost her during that surgery,” said Katherine’s mother, Cara.

Four years ago, Katherine Schroeder shared her story at her elementary school. 

Katherine desperately needed an artificial mitral valve. But they were simply too big for an infant her size. Doctors put her into an induced coma to try to buy more time, but she was still struggling two weeks later.

“At that point, we were told they were going to have to make an artificial valve work, or we were going to lose her,” Cara said.

The surgery was successful, but led to additional issues that kept Katherine hospitalized more than two months. Compromised electrical signals in her heart required a pacemaker. Then doctors had to remove a section of her aorta, after the initial ballooning became insufficient.

The next eight years brought more surgeries and intensive procedures to monitor the artificial mitral valve and other workings of Katherine’s heart. The pacemaker battery had to be replaced. Tissue around her aortic valve needed thinning. An irregular heartbeat required defibrillation, and then, a few months later, an ablation was needed to help the heart’s electrical circuits work more smoothly. Then a lead to her pacemaker broke, requiring replacement of the entire device.

At this point, it’s never a question of if she’ll need another procedure, it’s always a matter of when.

“They won’t be as big of procedures, but she’s never going to go to the heart doctor and have them say, ‘Everything’s fine, you’re dismissed,’” Cara said.

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Unable to participate in sports because of her daily medications, Katherine instead has thrown herself into the arts. She’s become involved in dance, musical theater and choir.

“She’s a mile-a-minute, nonstop person,” Cara said. “I always joke with her cardiologists that I want a remote to slow her down.

Katherine is a bit small, and is cautious with her health. Recovery from simple viruses is more difficult, and there are days when she is fatigued.

“Sometimes she’ll need to sleep in and take a morning class during study hall and that can be hard for other kids to understand sometimes,” Cara said. “We just have to adjust and work around it.”

Despite it all, Cara and her husband Paul try considering themselves lucky. Doctors have told them that if the same situation had happened with their son Grant, who is three years older, the technology wouldn’t have been available to help him.

“That has given us even more reason to help with the American Heart Association,” Cara said.

The American Heart Association funds more cardiovascular research than any organization outside the federal government, having invested in excess of $3.5 billion. The organization has funded research by 13 Nobel Prize winners and has been part of many lifesaving advancements such as the first artificial heart valve, cholesterol-inhibiting drugs, heart transplantation, and CPR techniques and guidelines.

Katherine began sharing her story in fourth grade, after her principal asked her to help promote the school’s Jump Rope For Heart fundraiser. They made a video of her story and soon Katherine was getting involved with heart-related activities at other nearby schools too, in addition to community Heart Walks and Heart Balls.

These days, she’s a frequent speaker on heart issues in the community, catering her story to her audience, ratcheting up the medical terminology and detail for more mature audiences.

She’s also put her own creative energy into her efforts, making lanyards and bracelets to sell, and operating neighborhood lemonade stands.

“I love being able to raise money to help find new technology that can help people live a longer life,” she said. “I feel like I’m not only doing something good for myself, but also others in the community.”

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Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

Busy mother couldn’t believe she was having a stroke, urges women to monitor health

Girl born with problematic heart thrives, loves giving others hope they can, too

‘Don’t just live, live well,’ urges heart disease, stroke survivor