Dana Hageman’s 17-year-old daughter, Allison, jokingly puts it this way: She was her mom’s inspiration and her 7-year-old brother, Arley, was the kick in the rear. Both Allison and Arley were born with a life-threatening congenital heart defect. Both needed surgery in the days following their births. And both are the reason Hageman is helping hundreds of other Arkansas families face the challenges of caring for children born with this distressing, yet common defect.

In 2011, Hageman founded the Arkansas Congenital Heart Defect Coalition. She has built a network of families, physicians, nurses and other medical staff to connect parents to support services and to advocate for children born with the condition. Hageman also finds time to fulfill her role as regional director of Mended Little Hearts of Little Rock, an advocacy and support organization working to empower families affected by congenital heart defects. It is support like this that Hageman wishes she’d had 17 years ago when Allison was born. “I know what it’s like to feel like you’re all alone. Being able to reach out and connect with other parents was something I didn’t have.”

The mother of three recalled the frightening moments after she gave birth to Allison, who was born on her 3-year-old sister’s birthday. She began turning blue due to lack of oxygen, and on her second day of life outside of the womb, doctors performed life-saving surgery. Allison was born without a pulmonary valve. It’s the same defect Arley was born with 10 years later. His first surgery came six days after being born. Between the two of them, they’ve had five surgeries and will likely have more throughout their lives.

Hageman knew she needed to reach out and connect with other parents in the same situation. “Having a critical care child is a traumatic experience. You find yourself panicking over every little thing your child does. It’s very difficult on the child and the siblings because they worry too.”

Hageman and her network have worked tirelessly over the last several years, advocating for public support of children born with congenital heart defects. The Coalition will soon petition the state for a congenital heart defect license plate. In 2013, it was instrumental in the passage of what is known as the Pulse Ox Act. Hospitals are now required to perform a non-invasive screening for critical congenital heart defect on newborns before they are discharged. “This is the most common birth defect. One in 110 babies will be born with it. We want patients and families to know they don’t have to try and cope alone.”

(Little Rock Family Presents The 2015 Pioneering Parents)