Derek's Story: Parent's Letter Project
Tetralogy of fallot– Derek (adult patient)
I was born in 1972 with tetralogy of fallot at a time where total repair was relatively new. I underwent surgery, called a “total correction" as an infant which was very successful and was transformed from a blue baby to a healthy one. I continued to see a pediatric cardiologist throughout my childhood. Once I became an adult, I transferred to adult cardiologists, who would frequently make comments like, “I’ve never seen a case like yours before." They also were unable to answer many of my questions, saying that they were unfamiliar with cases such as mine.
In my early 30’s, I had the good fortune of coming across an adult cardiologist who made the same comment - then followed it up with a recommendation that I see a cardiologist who specializes in congenital heart defects at Children’s National, Karen Kuehl, MD, MPH. I became a patient of Dr. Kuehl's and quickly learned that although my health was presently good, I would need further intervention to ensure that I remain healthy throughout my adulthood. Some other adult patients who were my age and with a similar history were already going into heart failure.
We scheduled a series of interventions, including pulmonary valve replacement surgery. During this time I also learned that Children’s had recently recruited one of the top pediatric cardiac surgeons in the world, Richard Jonas, MD. This affirmed my decision to have the surgery at Children's and not another hospital in the region. The doctors and nurses at Children's have always done everything that they can to make my experiences pleasant. They gave blood to the Blood Donor Center at a time when I needed it. In a sense, many have become an extension of my family. They now personally know my parents, my brothers, and my own children and are always asking about them. I don't believe I have seen this type of dedication before at any other hospital.