The ERHF® is excited to have completed the My Heart Binder project, which will serve as a resource for heart families in South Carolina. The binder contains a wealth of information about prenatal care, what to expect during surgery and recovery at MUSC, a list of local and national CHD resources, FAQs and guidance on looking ahead to the adult years. It has places for patients to keep all their medical records and write any questions they have for their doctor appointments, as well as business card holders so their care team members’ contact information is readily available. Our hope for the My Heart Binder is to empower families with information on CHDs and provide a place to keep all their medical records in one convenient location.
The binder has been distributed to the four pediatric cardiology clinics in South Carolina — Greenville, Columbia, Florence and Charleston — along with the Adult Congenital Heart Disease Clinic in Greenville. The My Heart Binder is a result of a yearlong collaboration between the ERHF and pediatric cardiologists throughout the state, with all funding provided by the ERHF®. Much of the writing was provided by ERHF® Board Members Katherine Gutierrez and Liz Lucey, PCICU R.N., with articles and content direction provided by Dr. Austin Rauniker and Dr. Manisha Patel, Greenville Health System, Dr. Sinai Zyblewski, Medical University of South Carolina and Carrie Smetana, ERHF® Family Advisory Committee chair and adult CHD patient.
Katherine said, “It was brought to our attention that there was a need for families to have a place to keep their children’s important heart records; something that would travel with their children through the years and into adulthood. The ERHF is thrilled to be a part of meeting this need and provide support to families throughout South Carolina.”