Kids at Heart Connects Families Who “Get It”


In the mid-1990s, a small group of heart parents seeking community with one another started a potluck dinner in the Egleston Hospital conference room. What began as a simple desire to get to know other families traveling on the same congenital heart disease (CHD) journey has grown into a program called Kids at Heart, which now serves about 4,000 families. Kids at Heart is a psycho-social support program that provides social, emotional and educational support programs to children with congenital heart disease and their families. The program is run by Senior Program Coordinator Alison Mueller and Program Coordinator Kalli Lamkin.
As a parent, I enjoyed seeing SO many other heart families and feeling like we were where we belonged. That there were people who KNEW what we were going through.”
Kids at Heart administers an active Facebook group of more than 2,000 parents and hosts events throughout the year designed to connect heart patients and their families to each other. The program is 100% donor funded, and it relies on both individual and corporate donations. Chick-fil-A for example often caters the program’s monthly family support dinner, and in October alone, Chick-fil-A Atlanta raised $150,000 by selling six-count packs of cookies at more than 180 of its stores.
Every Kids at Heart event is free to CHD families, who are often facing heavy financial burdens associated with their child’s care.
“Everybody has so much that they juggle. Our families tell us that they might never be able to spend a day as a family doing the some of the activities we plan for them and how much they value these moments of normalcy,” Mueller said. “Their children may have CHD, but they’re still kids, and they want to have fun with other kids. We love giving them that opportunity.”
Kids at Heart events include:
- Fall Festival at Southern Belle Farm
- Holiday Gathering
- CHD Week Celebration and CHD Awareness Week
- Siblings Support Day
- Mom’s Support Day
- Dad’s and Kids Day Out
- Teen Retreat
- Feed the Mom – Moms Support Groups
- Feed the Heart Dinners
- Parenting Your Heart Child Conference
- Camp Braveheart
- Family Fun Days at Chick-fil-A Stores and Support Center
- Swim with the Gentle Giants at Georgia Aquarium
- Monthly family support dinners
The monthly family support dinner, which was the genesis of Kids at Heart, is still important to the program. Most months feature a speaker on a topic relevant to heart families, and outpatient families are invited to join, serving as an important touchpoint for families with newly diagnosed kids who may be in crisis mode.
“It’s great to see others knowing we have this in common. The rest of our lives are with people who just don’t get it.”
“Family dinners are a wonderful way to welcome newly diagnosed families into the heart community,” Mueller said. “It can be very helpful and encouraging to meet people who really understand and who are farther along in their journey. To see their kids doing well and thriving gives parents a hope of things to come.”
Lamkin said Kids at Heart helps Children’s provide top-tier, family-based care. The physical care of a child with CHD does not exist in a vacuum. It affects the whole child and the whole family.
“We work with excellent, extremely knowledgeable nurses and doctors every day, but nothing replaces talking to another mom whose child is going through the same thing,” Lamkin said. “Kids at Heart allows us to make those connections for our families. Our patient families really take care of each other, acting as mentors, identifying resources and providing a peace of mind that can only come from shared experience.”
Kids at Heart stretches every dollar to provide the best experiences to as many families as possible. The larger events cost up to $40,000 to host, and Kids at Heart relies on the support of individuals and organizations in the community to make the program a reality for families. Many heart warrior families contribute to or volunteer at Kids at Heart events in honor of their child’s important heart milestones and as a way to give back to the community who supported them.
To make a donation to Kids at Heart with a one-time or recurring gift, send a donation eCard or make a tribute gift and designate your gift to Kids at Heart Cardiac Family Support.
Learn more about Kids at Heart and see a full calendar of events at www.choa.org/kidsatheart.
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.
