Support FOR A LIFETIME

Support for a Lifetime Laptop Screen

 

Mended Hearts was designed to provide support for heart patients,
but it also has a long-term impact on families.

By Tamekia Reece

A congenital heart defect (CHD) or heart disease diagnosis is devastating. It creates a jumble of emotions — fear, confusion, anger — for both the person diagnosed and their loved ones. For some, a glimmer of hope during this overwhelming time comes from a stranger: a Mended Hearts® volunteer. Mended Hearts’ accredited visitors have traditionally visited heart patients in the hospital. Now, because of restrictions created due to COVID-19, visits are done through My Heart Visit, Mended Hearts’ virtual visiting program. Whether in-person or virtual, these visits provide much-needed hope for patients and their families.

“The volunteer is able to say to the patient, ‘I’ve been where you are, and I know how you feel,’ which is powerful because knowing you’re not alone is the first step in being OK,” says Andrea Baer, executive director of Mended Hearts and Mended Little Hearts®.

In addition to emotional support, Mended Hearts provides education to help people manage their conditions and live healthier lives. That peer-to-peer support and education can have a huge effect on heart patients and their families for many months, years and even decades to come.

Giving Back Support

Mike Hild’s first introduction to Mended Hearts was through his mom. She was born with a CHD and had several open-heart surgeries while Hild was growing up. His mom was a member of the Dayton, Ohio, chapter of Mended Hearts, and even as a preteen, Hild could see how important the organization was to her.

“I remember conversations between her and my father. She went through so many surgeries and having the Mended Hearts community behind her was a comfort,” he says.

His mom died during a heart transplant operation in 1986. Over the years, Hild, an Allstate Insurance agency owner in Dayton, has offered a helping hand to others — much like Mended Hearts did for his mom. He gives away several college scholarships each year and is involved with Habitat for Humanity, homeless shelters, women’s shelters and school programs.

He received the 2020 Ray Lynch Community Service Award, Allstate’s top national honor commending an agency owner or financial specialist for community service. As the winner, he was able to designate a grant from The Allstate Foundation to a charity of his choice. He chose Mended Hearts.

“I’ve always wanted to contribute to Mended Hearts because I remember how it made my mom feel,” he says. “The support she and my family received was invaluable, and I’ll never forget it. That’s why I’m so happy to give back.”

Passing Along Education

Before the pandemic, Mended Hearts held monthly support and education meetings across the nation. Although those are on hold for now, educational resources are still available via the Mended Hearts website as well as through its Heartline (1-844-HEART87), social media channels and virtual visiting program. Even better, those resources are available to more than Mended Hearts chapter members: “We welcome anyone who is affected by heart disease,” Baer says, adding that the resources are offered to patients, caregivers, medical professionals and family and friends.

Rick Westfall learned about Mended Hearts through social media. His son, Daniel, was born with hypoplastic left heart syndrome (HLHS) in 1994. The birth defect affects normal blood flow through the heart, causing the left side of the heart to not form correctly.

“He had to have three open-heart surgeries, one within the first couple of weeks of birth, one at six months and one when he was 11/2 years old,” says Westfall, who lives in Houston.

The family struggled to find the help they needed.

Mike Hild receives the 2020 Ray Lynch Community Service Award from Allstate CEO Tom Wilson. Hild chose Mended Hearts as the recipient of the grant he received as part of the award.

“At the time, the local hospital wasn’t successfully repairing HLHS, so we had to search around and find a place that was,” Westfall says.

“We didn’t really have internet and there was no social media, so we had to look at brochures, track down the name of the surgery, track down the heart surgeon who created it and leave voicemails everywhere,” he says. Daniel was able to get his surgeries, but the experience was frustrating and frightening.

Daniel was already an adult when Westfall discovered Mended Hearts. Although Daniel died in 2018, Westfall has been an advocate for other parents of children with CHD for 25 years. He and “Team Dan’s Army” share educational information and resources through social media and conduct canned food drives to raise money.

For the past eight years, Westfall has requested a proclamation from the mayor of Houston to declare February 7-14 as Congenital Heart Defect Awareness Week. He also created #CHDREDNAIL. “People paint the ring finger of the left hand red and post it on social media to raise awareness for CHD,” he explains.

As part of his efforts, Westfall purchased two web domains, planning to use the websites to direct people to available resources. However, as he did more research, Westfall realized that much of the information he was linking to and sharing was from Mended Hearts. Instead of repeating the information, he donated the domains directly to the organization. Although he didn’t know about Mended Hearts when his son was younger, Westfall feels its support is indispensable.

“Mended Hearts is a great source to get information, find how-tos, what questions to ask and what resources you need. I was more than happy to help.”

Fostering Connections

Navin Kumar’s family also learned of Mended Hearts by chance. Kumar was born with Shone’s syndrome, a rare congenital condition characterized by multiple left heart defects. He needed several surgeries.

The Kumar family lived in Utah but had to go to Texas Children’s Hospital in Houston for the procedures. “My parents didn’t know anyone in Houston, but someone from Mended Hearts met up with them and took such good care of them,” Kumar says. Mended Hearts helped his parents find a place to stay during his recovery and provided the emotional support they desperately needed.

When Kumar was 3, he had his first open-heart surgery and world-renowned heart surgeon Denton A. Cooley gave Kumar’s dad a Mended Hearts pillow that he had signed.

“There’s a quote on the pillow that says, ‘It’s great to be alive and to help others,’” Kumar says. “I don’t know if I saw it when I was younger and it stuck in my head, but throughout my life, I’ve had that same attitude.”

Now 47, Kumar still has the pillow and lives his life by the inscribed slogan. He hasn’t let CHD or even an early-onset diagnosis of Parkinson’s disease prevent him from accomplishing his dreams. He won two bronze medals at the 2018 U.S. Open Table Tennis Championships as well as the silver medal for doubles and a bronze medal for singles at the ITTF Parkinson’s World Table Tennis Championships in 2019. He’s also a movie actor, appearing most recently in the 2020 horror/sci-fi film Attack of the Unknown.

“Everything I do is done to, hopefully, inspire others to realize that a positive attitude is the catalyst to enable our dreams to come true in spite of our struggles,” Kumar says.

He spread some of that inspiration as the keynote speaker at the 2019 MLH CHD Symposium.

“I hope that I made an impact on the parents of children with CHD. Hopefully, they were able to see my accomplishments and realize heart disease doesn’t have to stop someone from living and loving their life,” he says.

Attending the symposium had a positive impact on Kumar, too: “That was really the first time I had ever physically met people like myself, other adults with CHD, which was really powerful.”

And, according to Baer, that’s the whole point: “Mended Hearts provides social connection opportunities where people can get together with others who have experienced the same journey,” she says. The camaraderie and support can make a tough situation a little easier to handle.

Help for Little Hearts

MLH provides the same kind of support for children. “It’s vital for kids to know they aren’t alone and that their journey is validated by others who are just like them,” Baer says. “Local MLH groups host family events to bring kids of all ages together in a fun setting to foster friendships with others who ‘get it.’ From baseball games to picnics, kids have the chance to interact with others who can understand the unique perspective of having a CHD,” she says.

MLH’s Bravery Bag program provides personal care and support items to families whose kids are going into surgery. “The Bravery Bag is not just a bag of stuff,” Baer says. “It’s really a connection that says, ‘you’re not alone,’ and it gives the parents a way to get in touch with us.”

Baer knows personally how valuable this is because she was once the recipient of a Bravery Bag. “My son was born with a CHD in 2009, and I felt completely alone and devastated,” she says. A friend in another state told her about Mended Hearts and sent her a Bravery Bag when her son had surgery. “That was truly life-changing for me,” she says.

Baer started MLH of Southwestern Pennsylvania and is still involved with the local group. “Mended Hearts has given me the opportunity to truly live my passion, which is to make sure other people aren’t alone on this heart journey,” she says. “I’m so glad to know that I
can facilitate the emotional support and education of heart patients.”

Once again, Mended Hearts and Mended Little Hearts are gifts that keep on giving.