Fifteen years ago, Amy Basken was just like any other new mom who knew little, if anything, about Congenital Heart Disease (CHD), the most common birth defect in newborns. Her son was born perfectly healthy, or so they thought, until a nurse suspected a problem. When her baby was just three days old, doctors performed surgery to repair a coarctation of the aorta on a heart the size of a walnut, and Amy’s path in life was forever altered.
I vividly remember being completely overwhelmed with information and feeling lost when my son was diagnosed,” Amy said. “I also felt a little bit of survivor’s guilt. My son did very well and is thriving today but watching families who had been in the hospital with their kids for months or even had to leave the hospital without their babies, inspired me to want to do more, to give back. I felt called and in a unique position to help.”
Amy volunteered as an advocate for CHD issues and eventually co-founded the Pediatric Congenital Heart Association, where she is the Director of Programs. In her role with PCHA, she works with patients, families, providers and policymakers to educate and advocate around issues such as federal research funding for CHD and the importance of life-long care. She is a nationally recognized speaker on the importance of data transparency.
Amy said she saw the need to give CHD families a voice in Washington, D.C., and to raise money for research in this relatively new field. Most recently, PCHA has advocated for $50 million for research and surveillance for the Centers for Disease Control and Prevention. But she also saw a need to help families who were like her at the beginning of her CHD journey – overwhelmed and lost.
“CHD families learn a lot about their child’s heart function, but they don’t learn about the quality of care at their center,” Amy said. “We created a tool with guided questions, which are vetted by the medical community, and we began advocating for hospital transparency to give families the ability to make more informed decisions about their child’s care.”
Sibley Heart Center Cardiology helped to develop the Guided Questions Tool and its recent translation into Spanish. PCHA studies the effectiveness of the tool and how it is used.
“We’re learning that families love the tool and so do doctors,” Amy said. “All of our educational materials are distributed through the national organization, with the state chapters complementing care packages with comfort items. This method ensures we can be confident that the resources families are getting are consistent and well vetted.”
The state chapter infrastructure of PCHA was established as a grassroots effort in 2017. PCHA trains and educates the volunteer leaders, equipping them to be successful. The organization emphasizes quality interactions with CHD families and building strong relationships with the medical experts and hospitals in the state. PCHA offers support and guidance around advocating for research and improvements at CHD care centers through initiatives like the Patient Family Advisory Council at Sibley. A robust social media platform, with a reach of about 250,000 engaged users each week, allows PCHA to connect members across the country.
The PCHA Advocacy Conference in March in Washington D.C. gives CHD families a unique opportunity to advocate for CHD awareness and research with their senators and representatives.
Their personal stories have such impact, and it’s a chance to bring something good out of a really difficult experience,” Amy said. “You can see the impact of their stories on staffers who have never heard of CHD before. We have to be out there telling our stories. It’s a great way to build relationships, and it makes a difference in policy.”
To get involved with Georgia chapter of PCHA, email Melanie Toth, State Chapter Coordinator, at email@example.com.
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.