The Dawn of a New Era in ACHD Care

I’ll never forget the moment I first realized I was receiving inappropriate cardiology care from a general cardiologist and discovered the Adult Congenital Heart Association (ACHA). I browsed the ACHA Clinic Directory and was so thankful that I had found this resource, but was also a bit bewildered. How does one become an adult congenital heart disease (ACHD) cardiologist? If I have several choices in my state, how do I know which ACHD program is better equipped to handle my care?

Part of my decision to transition my nursing career from pediatric care to ACHD care was to help patients like me navigate the complexities of health care, including where to find appropriate care. After being hired as the nurse coordinator for an adult congenital heart program in 2013, I discovered that there were already steps being taken to establish physician board certification and program accreditation for the care of ACHD patients. Soon, I had the privilege of not only witnessing the evolution of ACHD care, but helping in the process. It was a surprisingly emotional experience for me.

The first new medical specialty in 30 years, the medical board examinations for adult congenial heart cardiology were groundbreaking in many ways. I watched as the ACHD cardiologists I know prepared for the examination in October of 2015 and I celebrated alongside them as we toasted to their success. I am beyond grateful that we now have legitimacy through the board of internal medicine as a cardiology specialty and this will help to guide our care for many years to come.

To pilot the ACHA ACHD Accreditation Program process, five ACHD programs throughout the U.S. were chosen to spearhead the experience. The adult congenital heart program where I work was chosen as one of these five Pilot Sites*. From a personal standpoint, I saw it as an opportunity to learn more about the requirements of the ACHA ACHD Accreditation Program, and I tried to evaluate its value from both a personal and professional vantage point.    

Robust is an understatement. The ACHA ACHD Accreditation Program committee considered every necessary aspect of ACHD care with a holistic and administrative focus. This will help to ensure complete, well-rounded patient-centered care with the administrative infrastructure to withstand the ever changing health care environment. As a true team, we worked to ensure the necessary documents, protocols, and services were in place before our site visit. 

The day of our site visit was exciting and truly joyful. We were excited to present the structure and cohesiveness of our program while also to discuss the ACHA ACHD Accreditation Program requirements in full detail. From a professional standpoint, I took immense pride in our program’s development, my personal contributions to our ACHD team and our program’s unique contributions to ACHD cardiology care.

As I got into my car to drive home at the end of that day, I just sat there crying tears of joy. I was overcome with emotion. I remembered the scared lost woman I was just a few years earlier, desperate to find someone I could trust with my heart, with my life. I thought about the many other adults with congenital heart disease, who have been lost to care, and who may have the same desperate lost feeling, and I felt a sigh of relief. I know that the ACHA ACHD Accreditation Program will help these people find the appropriate high level care that they need and deserve. I also know that the children born with congenital heart disease today won’t face the disparity of care as an adult that so many of us have experienced. I’m so grateful that I have been able to be a small part of that process and for ACHA and all the medical professionals and patient advocates who have tirelessly worked to bring the ACHA ACHD Accreditation Program to fruition.

This is it folks, we are at the dawn of a new era of ACHD care and it’s an exciting time.

*Please note that all five Pilot Sites are currently completing the accreditation process