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 walking the same congenital heart disease (CHD) path has grown into a program called Kids at Heart, which now serves about 2,000 families. The program is run by two staff coordinators, Kati Keyes and Alison Mueller.

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, which is 100 percent donor funded, administers an active Facebook group of 1,000 parents and hosts many events throughout the year designed to connect young heart patients and their families to each other. Every 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,” Keyes said.  “Their children may have CHD, but they are 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 Party
• CHD Week Celebration
• Siblings Support Day
• Mom’s Morning Out
• Dad’s Day Out
• Cardiac Teen Retreat at Historic Banning Mills
• Parenting Your Heart Child Conference
• Monthly family dinners

The monthly family dinner, which was the genesis of Kids at Heart, is still important to the program. Most months, it is catered by Chick-Fil-A and features a speaker on a topic relevant to heart families. Outpatient families are invited to join, and they serve 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.”

Keyes said Kids at Heart helps CHOA to 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,” Mueller 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 $30,000 to host. 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 Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.