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Never Alone: Mended Little Hearts Connects Parents with Other CHD Families

Mended Hearts was born in 1951 when a Boston heart surgeon suggested to some of his patients that there would be much to gain from sharing their experiences with each other. It grew from four members to more than 40,000 and is now the largest peer-to-peer heart patient support network in the world. In 2004, one of the Mended Hearts leaders had a grandchild with CHD, and Mended Little Hearts was launched to address the needs of parents with heart warrior kids. Mended Little Hearts now has 60 chapters in the U.S.

Jodi Smith, program director of Mended Little Hearts, knows what it’s like to want to connect with other CHD families. One of her first thoughts when her son was diagnosed with a heart defect when she was 20 weeks pregnant was, “Who can I talk to who’s been through this?”

You’re not prepared,” Smith said. “I read What to Expect When You’re Expecting cover to cover, but CHD was not on my radar. So many people have never heard of it. I had never heard of it, and I knew that I couldn’t have someone feel the way I did when we first learned about my son’s condition.”

Mended Little Hearts is a network of support groups. The organization matches parents with similar heart journeys to each other, both locally, if possible, and nationwide. Trained program volunteers do hospital visits with newly diagnosed CHD families to answer non-medical questions about what it’s like to parent a CHD kid. Volunteers distribute “Bravery Bags” that include educational, fun and needed hospital stay items. They also supply toy chests for CHD kids at their cardiologists’ appointments and even “Angel Boxes” to let CHD families who have lost children know that they are loved and part of Mended Little Hearts forever.

Mended Little Hearts produces, in partnership with healthcare experts, educational items such as webinars and parent resource guides to address issues important to CHD families, like staying in care, feeding and neurological issues. Mended Little Hearts also advocates on issues such as newborn screening, CPR in schools, research funding, equal access to care and improved surveillance of CHD patients.

In the times of COVID-19, Mended Little Hearts has had to become creative about the delivery of their content to CHD families. With the recent donation of 500 iPads, they are now able to virtually “visit” CHD parents in hospitals, with a particular focus on underserved hospitals. Visits can also be done through an app on parent phones. The Mended Little Hearts Symposium, an annual conference for parents and medical professionals to discuss innovations and breakthroughs happening in the field of CHD research, will be virtual this year for the first time in November.

You can find education about CHD in a lot of places, but what makes our content unique is that it’s written by medical professionals and parents in partnership so it’s very accessible and parent-centric,” Smith said. “A lot of it focuses on things that you, as a parent, may be feeling or going through. Everything for us is the person-to-person connection, so that you know you aren’t alone. You always have someone to talk to who understands.”

While Mended Little Hearts does not currently have a chapter in Georgia, their national office is located in Albany. They can make parent matches for Georgia families and provide all materials and training, including Zoom accounts, to establish a local chapter. Mended Little Hearts is searching for a group lead coordinator to kick off the effort in Georgia and recruit members. If you’re interested in learning more, please contact Jodi Smith at Jodi.Smith@mendedlittlehearts.org.

Resources:

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.

*Dana Jones – Dana has entered Mended Little Hearts’ Rock Your Scar contest, which is a CHD awareness campaign featuring all age groups and how they embrace their CHD. One of Dana’s photos was part of a Rock Your Scar campaign shown on a marquee in Times Square.

Dana’s submission for the MLH’s Rock Your Scar Contest

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