For families of infants born with a congenital heart defect (CHD), the first days and months at Johns Hopkins Children’s Center often pass in a blur — marked by surgeries, periods of recovery, follow-up visits and high anxiety.

Amid the emotional intensity, families meet and bond with each other and with the dedicated care team — physicians, nurses, child life specialists and others — who provide crucial 24/7 treatment and support.

“The only people who understand what it’s like to have a child with CHD are people who have one,” says Katie Swan, clinical operations manager for the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center.

Which is what inspired Swan and others to organize the first annual Heart Center Family Reunion last October — a joy-filled day at the Prigel Family Creamery in Glen Arm, Maryland, which drew dozens of families and Heart Center clinicians and staffers together to connect through fun, games and carnival food.

“This was an opportunity for parents, patients and their siblings to get together and just play and have fun — there was no agenda for the day. And it was wonderful for our team as well,” says Swan. “We rarely get to see our patients outside of the medical setting, living their best lives.”

The reunion was made possible through the generosity of families, nonprofit organizations and vendors, who raised $7,500 for the event. There were even T-shirts donated for the day (blue “Heart Saver” shirts for the care team and red “Heart Warrior” shirts for young patients).

Thanks to such support, and because the first Heart Center Family Reunion was such a hit, it has now become an annual event: The second gathering took place in late April at the Robinson Nature Center in Columbia, Maryland.

Read more about how patients with congenital heart defects and their families find a “second home” at Johns Hopkins: “Long Haulers.”

Make a gift to the Blalock-Taussig-Thomas Pediatric and Congenital Heart Center: Bit.ly/JHCCHeart.