The Power of the Pillars

What does it take to run the world’s largest peer-to-peer support group? The Mended Hearts, Inc. has found the three pillars that support its mission.

By Rachel Hedstrom

Being the largest cardiovascular peer support organization in the world is a big role, with thousands of volunteers spending countless hours helping millions of people in the U.S. and around the globe. But the true power of Mended Hearts®, Young Mended Hearts and Mended Little Hearts® lies in its people: the volunteers, staff members, patients, families, healthcare providers, sponsors and community members who see a better future for all heart patients.

The mission of inspiring hope and improving quality of life for heart patients and their families is accomplished through three firmly established initiatives: ongoing peer-to-peer support, education and advocacy.

Together, these three pillars provide the organization and its members with a clear vision on how to make life better for those in any stage of heart disease, as well as for the caregivers and families who support them and healthcare providers who care for them.

MHI understands that these three pillars create a strong foundation and a unique model for improving the lives of patients and families.

The story of Mended Hearts, Young Mended Hearts and Mended Little Hearts is best told through the people who carry out the mission: the volunteers who put their hearts into helping others.

Here’s a look at the three pillars through the eyes of those volunteers.

The Power of Support

When Kristine Slovis, coordinator of Mended Little Hearts of Central Virginia, creates and delivers Bravery Bags to local hospitals, she thinks about her son, Gilbert, who was born with congenital heart disease (CHD). But she also thinks about other parents facing the same situation.

The impact of the work she does is seen in the messages she receives from grateful families, like this one:

“My name is Gabby Rivera, and I am a registered nurse in the Richmond area — rather, I was a registered nurse until about a month ago,” the email read, then went on to tell this mother’s story of how her seemingly healthy child suddenly became gravely ill at nine days old and required emergency open-heart surgery.

“Our lives were shattered,” Rivera wrote, detailing a first day “filled with tears and fears.” As her son was being medically transported for life-saving surgery, she and her husband began to consider the logistics: “Here we were with just ourselves and the clothes on our back.”

“Then, as if to read our minds, the cardiac services social worker arrived with a Bravery Bag. What perfect timing! We needed the toiletries and there was everything in one place. Our bag also had a baby blanket made by the grandmother of another CHD patient. This blanket stayed swaddled or wrapped on our son the entire visit. The adorable print and soft fabric made the white bed feel more like home — and him more like my baby.”

Rivera’s son recovered and is thriving, and she and her husband used everything in the Bravery Bag, including the information provided and the activities to help them pass the time.

“All in all, the bag made a bigger impact on our stay that I can put into words,” she wrote. In fact, it made such a difference that Rivera now works with Slovis as a volunteer co-coordinator, hanging up her stethoscope to become a stay-at-home mom and advocate for babies born with CHD and their families.

“Ever since then, she’s been a huge part of our little team; she is extremely helpful,” Slovis says.

Making the Journey Together

Slovis’ journey began before her son was even born and she met with the mom of another child with CHD: “It was everything, really, because you feel so alone. I had never even heard of CHD prior to the diagnosis. I naively thought I was going in to find out if I was having a boy or a girl; I wasn’t expecting anything else,” she says.

“A diagnosis like this just blows you away. Then to meet other families who have been there — whether it’s the same defect or not — they’ve been there.”

Support appears in many ways, Slovis says, listing the various activities and items she and her team pull together to help surround and comfort families. While the pandemic paused in-person hospital visits, there are still so many ways to help. Members of her group fill the Bravery Chest at their local children’s hospital with items to brighten children’s days; they also create robust Bravery Bags filled with everything from information on CHD to toiletries to a heart-shaped Mended Little Hearts pillow, lanyards, a stuffed animal and a handmade blanket. A team of three volunteers makes the bags and delivers them to the hospital (often to a social worker) who then hands them to the family after a baby or child has heart surgery or other medical procedures. “The social workers will tell you what a difference it makes,” Slovis says.

Visits Make the Difference

Bill Farr, president of Mended Hearts Chapter 400 in Fayetteville, North Carolina, is part of a team that has visited more than 8,000 patients in their hospital rooms and almost 900 families in the waiting room since 2016. While visits are on pause right now due to COVID-19, Farr, an accredited visitor, looks forward to getting back in the hospital and helping provide support and encouragement for those facing a cardiac event.

“With all my stents, I’ve also had a lot of catheterizations,” Farr says. He has recovered from a quintuple bypass, 10 stents and six heart attacks, none of which has kept the 77-year-old from staying active and doing what he can to help others. “I talked to one lady before her cath was going to happen,” he recalls. “Her hospital bed was literally shaking. By the time I left, she had calmed down.”

Visiting patients includes giving them informational brochures, answering whatever questions he can and understanding that patients have different needs.

“We ask open-ended questions to get them to say something other than ‘yes’ or ‘no.’ Sometimes, we will be there for five or 10 minutes; sometimes, I’ll be there for 45 minutes. Whatever it takes to talk to the patient and let them know what’s going on and, based on my experience, what to expect. I think it helps them a lot.”

Farr also speaks with families, many of whom are just as nervous (sometimes more) than their loved one. He gives them a copy of a Mended HeartGuide and tries to reassure them, knowing that his presence alone may be most helpful. “The families, they are very appreciative,” he says. “They see someone like me and hear what I’ve been through — and they see I’m still here.”

Mended Hearts and Mended Little Hearts — and, beginning in August 2021, Young Mended Hearts — provide support in many ways. In 2019, that included 1,755 local chapter events and meetings for Mended Hearts, 834 community events for Mended Little Hearts, and the delivery of 5,131 Bravery Bags and 418 Lite Bravery Bags. Additional support is offered through toy drives, providing food for families in hospitals, procuring AEDs, walks, health fairs, Bravery Chests, toy ride-along cars for children in the hospital and so much more.

The Power of Education

Annual and regional conferences, CHD symposia, multi-chapter meetings, advocacy events, leadership trainings and visitor trainings all help carry out MHI’s mission of empowerment through education.

Bill Stark, president of Mended Hearts of The Coachella Valley in California (who also serves as vice president of programs and visiting chairman), has been involved with his Mended Hearts chapter since 2003. He started attending educational programs after his own heart attack because of the difference he felt it made in his life: “I’m inquisitive, and I wanted to understand more of the mechanics and underlying issues. When I did, that made me more comfortable in my recovery,” he says.

He also had plenty of questions that he wanted answered. “What do I look for in case something goes wrong? Do I call 911? Call my doctor? Talk to the cardiac rehab guys? They provided a tremendous amount of education to me; they got me through a whole lot of stuff.”

Stark credits educational efforts on the international, national, regional and local levels for allowing patients, their families and caregivers access to the latest information. Conferences and webinars on Zoom provide a wealth of information, and educational content is also found on MendedHearts.org.

“They’ve expanded the amount of information on that website considerably over the years,” Stark says. “You can get the HeartGuide, information on lots of topics such as AFib, heart failure, etc. And it’s open to the public, so you can get it for free. All this is on the website.”

Online Engagement Improves Education

Mended Hearts and Mended Little Hearts’ use of social media is yet another way to stay engaged and informed, Stark says. In 2020, the total number of followers for Mended Hearts (including both national and chapter pages) was 21,840 across Mended Hearts’ Facebook, LinkedIn, Instagram and Twitter accounts. Mended Little Hearts uses Facebook, Twitter and Instagram to communicate, with a total of 108,899 followers as of 2020. “It’s amazing what Mended Little Hearts does with social media,” Stark says. He also points to the award-winning Heartbeat ™ magazine as a valuable source of both information and inspiration.

In-person meetings, when possible, are helpful ways to get education, Stark adds.

“We have a wonderful set of doctors, nurses, pharmacists and technicians who come to talk to us on a local level,” he says. Topics covered have included AFib, heart failure, surgery, MitraClips, cardiac rehab and 911 emergency response.

“It’s very meaningful for people to stand up and tell their own stories. From that, many people get information in almost a secondary way,” he explains. “In our person-to-person meetings, you learn a whole lot from the questions somebody else asks. I really am a real fan of that, and I know many people in our chapter like that.”

On an individual level, since in-person visiting has been on hold due to COVID, Mended Hearts of The Coachella Valley supplies nursing staff and social workers with educational brochures to hand out to patients, as well as iPads loaded with various educational materials. The iPads also offer a way for patients to connect with someone who has experienced a similar diagnosis.

Stark understands the personal impact of heart disease well: In addition to his own events, his elderly father has battled heart disease at the age of 93, as has his daughter, who is just 42 years old.

“I think in the case of patients, education empowers them to believe maybe there’s hope at the end of the tunnel that they can live a healthier life,” he says. “People come into it with all kinds of different thought processes: Some are pragmatic, others are inquisitive, and some are really inquisitive. You can reduce their fear or anxiety by talking through the issues.”

The Power of Advocacy

When Andrea Francis walks into an elected official’s office, she knows that speaking her heart and mind is helping millions of patients, families and caregivers who battle heart disease. For Francis, a volunteer with the Greater Rochester of New York’s Mended Little Hearts group, the mission is personal.

“I have twin boys, and one was born with a critical congenital heart defect that required life-saving open-heart surgery at 13 days old,” she says. “He’s doing great, and I started volunteering with Mended Hearts and Mended Little Hearts when he was 3 years old. I was figuring out what to do to give back to an organization that has given so much to me during the scariest parts of our journey, and through it, I’ve found my voice and our passion.”

Francis is part of a team that has made multiple trips to Washington, D.C., to advocate for research and funding to extend the lives of patients with heart disease. “It’s absolutely incredible,” she says of the visits. “When you think about the number of organizations and companies who are trying to get time on the calendar of their local elected officials, to be able to go in and sit down and tell your story, to convey what’s important to you and how efforts have helped their life and your life, it’s both empowering and humbling.”

She was part of the advocacy team from Mended Little Hearts that helped pass the Congenital Heart Futures Re-Authorization Act in 2018, authorizing the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to build upon existing programs to improve the quality of life and care for individuals with CHD. “It was a huge win, and it’s based on the voices of the heart patients, caregivers and parents.”

Some of the many topics that Mended Hearts and Mended Little Hearts focus advocacy efforts on include:

• Work to build a body of evidence demonstrating that peer support leads to better outcomes

• Advocate for increased patient engagement in decision-making bodies at the FDA and CMS through legislative language

• Centralized reporting for pulse ox screenings to further decrease CHD deaths in children

Francis’ son Keegan is non-verbal; he communicates with the use of special devices but still has a voice thanks to his loving family. “My husband and I have had to advocate for both of our children,” Francis says. “It has taught us how to use our voices to get the best outcomes for all of us. When the boys succeed, when Keegan succeeds, we succeed as a family. We use our voices collectively to better our lives.” She hopes that one day, he will be able to share his story himself. Until then, she will continue being the voice for him and the many others like him.