Twenty 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 fluttering through my mind. Gabe has a congenital heart defect? Something is wrong with his heart! What did I do wrong? Is this my fault? Is he going to live? What doctor should I take him to?
Even 20 years later I haven’t stopped worrying about my son’s heart. That may sound daunting to someone who has just received a diagnosis and is reading this, but what I can tell you is 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’ve stayed with him for 20 years for reasons that you can’t necessarily learn ahead of time:
He answers all of my questions. He’s gotten to know Gabe and our family quite well over the last 20 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. Gabe would also ask questions from the age of 5 to 20 and he answers them all.
He draws pictures. Congenital heart disease is not an easy thing to grasp, and it’s really important for parents to understand the full scope of their child’s defect and all possible treatments and surgeries to correct the problem. He would also explain best and worst case scenarios, which I understood he had to do. These were tough to hear but he would make them emotionally easy to process. He always speaks in simple terms and draws pictures so that we can visualize what’s happening and what needs to be done. Now the Heart Institute has developed the HeartPedia App, which makes understanding these defects even easier for all of us.
He’s earned our trust. 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’s self-confident and yet knows when it would be valuable to get another professional’s perspective. Most importantly, he truly has Gabe’s best interest in mind.
He’s developed 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 is 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. And the relationship has worked beautifully. His cardiologist has helped him feel strong and capable. Gabe has never felt like he’s needed to be limited by his heart defect, and I think his cardiologist is largely responsible for this. He also trusts his cardiologist and is never scared to ask him questions. He has shared his life with him. He knows not only his heart, but his favorite sports, his active lifestyle and his desires in life.
He’s accessible. We know that we can call him day or night. I know this because I have called him at all hours. For example, soon after Gabe had open heart surgery to replace his pulmonary, he was hit in the chest by another player while playing ice hockey. Gabe wanted me to call his cardiologist immediately 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 — and it was. 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. We were all happy.
He suggested we connect with other CHD parents. And I’m so glad that he did. I realized that while our families and friends were incredibly supportive of the challenges we faced with Gabe’s heart defect, the people who could truly understand what we were going through were the 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 20 years I have learned so much from these families. I needed them to cry with me and to celebrate the good times. I have helped new moms and now moms with teenagers like Gabe. Receiving the help is a great experience and giving is very rewarding.
We’ve been on this congenital heart disease journey for 20 years and we’ve learned a lot along the way. I feel fortunate to have found an incredible partner in his cardiologist, because Gabe has never felt limited by his congenital heart disease. Sure he’s had two major heart surgeries and will need to be followed by a cardiologist who specializes in congenital heart disease for the rest of his life, but he has 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.
As parents, we assume the role of “rock” and try to hold it together for our kids. This job has never come naturally to me, even as Gabe has grown up. I know that being strong for him was made easier by the trust and confidence I had in his doctor. I also know that if he ever has a question he feels comfortable to personally call or email his cardiologist on his own. Gabe is off to college and I feel confident that he is still well taken care of and for the rest of his life he will stay in contact with his cardiologist who welcomed him into this world, has followed him for the last 20 years and will continue to be there for him.