Twenty-six years ago, my son was born with a heart condition called tetralogy of Fallot. When I found out I was shocked and had a million questions. Gabe has a congenital heart defect? Is this my fault? Is he going to survive? What doctor should I take him to?
Finding the right pediatric cardiologist makes the difference
Even 26 years later, I haven’t stopped worrying about his heart. That may sound daunting to someone who has just received a diagnosis, but I can tell you that things get easier with time, and finding the right pediatric cardiologist can make all the difference in the world.
How did I choose Gabe’s cardiologist? Initially he was chosen for me by the hospital. Then I chose him after doing a lot of research. He studied at top institutions, and his research, clinical interests and publications were very impressive. He was located at a top children’s hospital which has specialized programs in both pediatric congenital heart disease and adult congenital heart disease. And online I found nothing but good comments and strong statistics. But we stayed with him for 24 years for reasons that you can’t necessarily learn ahead of time:
Qualities We Valued in Our Pediatric Cardiologist
He answered all of my questions
He got to know Gabe and our family quite well over 24 years. During those first initial appointments, he would see my list of questions and say, “Why don’t we start with your list first?” If there were 40 questions, he would answer them all, and I never once felt rushed.
He drew pictures
Congenital heart disease is not an easy thing to grasp, and it’s important for parents to understand their child’s defect and the treatments and surgeries to correct them. He would also explain best and worst case scenarios, which I understood he had to do. Those were tough to hear but he would make them emotionally easy to process. He always spoke in simple terms and drew pictures to help us visualize everything. Now the Heart Institute has the HeartPedia App, which makes understanding these defects even easier.
He was trustworthy
There was a time early in Gabe’s diagnosis when his cardiologist recommended we get a second opinion. This made me realize a couple of things. He was self-confident, yet knew when it would be valuable to get another professional’s perspective. Most importantly, he truly had Gabe’s best interest in mind.
He built a relationship with not just me, but Gabe too
It has always been important to me to have a strong relationship with Gabe’s cardiologist through open communication, honesty, and trust. But I realized as the years went on how important it was for Gabe to build a relationship directly with his doctor, because eventually it would be Gabe’s turn to take ownership of his own heart health. His cardiologist helped him feel strong and capable. Gabe never felt limited by his heart defect, and I think his cardiologist is largely responsible for this. He also trusted him and felt comfortable asking him questions. His cardiologist knew not only his heart, but his favorite sports, his active lifestyle and his desires in life.
He was accessible
We knew that we could call him day or night. Soon after Gabe had open heart surgery, he was hit in the chest during ice hockey. I called his cardiologist and he assessed the situation over the phone. His cardiologist decided that Gabe didn’t need to be seen right away but that he would get him an appointment the next day to ensure that everything was fine. That immediate reassurance meant the world to me and I was able to sleep well that night. His chest was just bruised and his heart was fine.
He suggested we connect with other CHD families
Our families and friends were incredibly supportive during Gabe’s journey. But the people who could truly understand what we were going through were other families who had been through it before. His cardiologist also warned me that I shouldn’t compare Gabe to another kid with the same condition because even if two kids have the same defect, the manifestation will be unique for every individual. Every kid is different, but every Mom has the same fears, questions, and concerns. It was the camaraderie and support and connections with other families who have been there that was invaluable to us. Through my 26 years I have learned so much from these families. I needed them to cry with me and to celebrate the good times.
Focusing on specialized, life-long care
We’ve been on this congenital heart disease journey for 26 years and we’ve learned a lot along the way. I feel fortunate to have found an incredible partner in his cardiologist, because Gabe never felt limited by his congenital heart disease. He’s had two major heart surgeries and will see a cardiologist who specializes in congenital heart disease for the rest of his life. But but he had a “normal” childhood, adolescence, and adulthood. In other words, it’s important for parents to realize that their children born with congenital heart disease will need specialized, life-long care.
Gabe has graduated college and is now working in Denver, Colorado. He has since transferred his heart care to an adult congenital heart disease specialist at Cincinnati Children’s, and has been seeing him for the past couple of years.
Read Next: If your baby has been diagnosed with a heart defect, you may be looking for more information. Learn answers to some common questions, the resources that are available to you, and how to connect to other families.