Transition to Adult CHD Care

After my introduction to the Adult Congenital Heart Association and realizing that I was part of an ever-growing population of adults living with congenital heart disease, I realized that one of the overarching themes was that there were and are a significant number of adults with congenital heart disease (CHD) who got lost in care. The more stories I read, some of them with life ending consequences, the angrier I got. It took a lot of reading to try to put the pieces together of what could have possibly gone wrong and why because my story could not have been more opposed to all the stories I read. But, I have never read a story of anyone who had a seamless transition to adult care, but I did. I count myself lucky, but I know now that it all rode on the shoulders of one man, and I hope that my story can be an example of what a transition looks like and that it can become one of the models of care to be followed. 

The stories about those who have been lost to care range from adults with CHD having no cardiac care to those receiving inadequate care from general adult cardiologists who do not understand the complexities of CHD. And since we have no national tracking mechanism for those with CHD, no one knows exactly how many patients are still out there receiving no care or vastly insufficient care because many of them never received the critical information needed about the lifelong implications of their CHD.

Looking back I know that I found so much false hope in the words, “complete fix” and “complete repair”—for me, the word complete is synonymous with done. It was an optimistic and reassuring statement for me, someone who would potentially need more surgeries or interventions throughout their entire life, along with lifelong follow-up care. I wonder how many of those patients out there not receiving care are still holding onto these words.

Although I had my first surgery at 54 hours old, I didn’t have my “complete repair” until my third open heart surgery at 6. In the years following that surgery my family and I were misled by those words because I thought the chances of me ever needing an open heart surgery were very slim until I was informed differently in my mid 20’s. While I may not have been fully aware of the future repairs needed to my heart, I knew fully I would have to be seen at least once a year by my cardiologist who specializes with CHDs not just acquired heart issues. While when I was younger, it was never explicitly said to me, I was never led to believe that there was a termination date to that plan.

When I was in my early 20’s my pediatric cardiologist informed me that I would be transitioning to the adult congenital heart disease (ACHD) program in about two years, something I had never thought about before. I was in an extreme state of shock. This man had been with me since the day I was born. His intuition saved my life when I needed emergency open heart surgery. I couldn’t imagine anyone else caring for me, my trust of him was second to nobody. To say the thought of leaving his care terrified me like nothing I had ever felt would be an understatement.

When the time came to make the transition, he scheduled me for a visit with him that he had coordinated with the ACHD team so we could meet and discuss my case, and I had time to ask them both all the questions that I needed to feel comfortable. After that meeting, he led me down the hall to the office of the nurse practitioner who coordinated the ACHD program, and he told me, “If you need anything done you call her.” He was right. As I met with her we scheduled out my next visit to see my new cardiologist, there was zero lapse in my care.

What I learned from the way my pediatric cardiologist took me through a very emotional and critical time is that the transition starts by informing the patient at a young age that their schedule of care must be lifelong, far before they hit the transition period into adult care. Secondly, having at least one ACHD cardiologist or clinic already selected as a recommendation for the patient potentially even with the reasons they are a good choice for the patient is a huge confidence builder and will give the patient the direction they need to continue getting the care they need. Lastly, it is important to give the patient adequate time to process the transition of care.  We, who have been so sick, are very reliant on those that we have come to trust with our life. The transition should begin being discussed several years before it happens to prepare the patient for that separation mentally and to give them time to ask all of the necessary questions. From my experience, all of these were essential components to my healthy and successful transition from pediatric to adult CHD care. I believe they should be the basis that every pediatric cardiologist molds their transition plans around with the consideration that each patient has unique needs in their transition and continuation of care.  

My pediatric cardiologist knew my transition all rested on the shoulders of one man, him, and he took it as seriously as any other component of my care for the 25 years he cared for me—for that I am forever grateful.