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HOME/Heart Conditions/A Mother’s Perspective: Finding the Right Pediatric Cardiologist

A Mother’s Perspective: Finding the Right Pediatric Cardiologist

A Mother’s Perspective: Finding the Right Pediatric Cardiologist
February 7, 2018
6 Comments
By: Zerlina Dubois

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. 

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TAGS:
  • congenital heart defects
  • Home
  • tetralogy of fallot

About the author: Zerlina Dubois

Zerlina Dubois is the mother of Gabe Dubois, who was born in 1995 with tetrology of Fallot. Zerlina is married to Phil Dubois and is a master perfumer at Procter and Gamble.

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Comments

rutty Guzdar May 30, 2015 at 2:06 pm

We are indeed very proud of the Dubois family including his sister Simonne-not easy but an inspiration for others. All the best for the future.

Ethel August 14, 2015 at 5:57 pm

Having a doctor that can explain the process and the condition to you in the best way possible is something that I think is very important. You’re right when you say that it’s a very complicated condition to explain. Using these tips will help choose the right doctor. Thanks for the informative post.

Breck Lewis October 21, 2015 at 9:21 am

I really like how you emphasize that he should be able to answer all of your questions first because it creates trust. Having him be accessible is also super important for the patient. My wife needed a new cardiology after we moved and we had no idea where to start looking. We finally got some recommendations from neighbors that we knew. Thanks for posting this article it’s helped me decide on what route to take.

G and me February 13, 2018 at 10:18 am

Hello and thank u for writing this, I fell upon your blog post unintentionally . But it couldn’t of come at a more critically necessary time. My daughter Gabrielle is now 18 and also a territory baby. Has experienced 2 open heart surgeries as well as struggling everyday with social acceptance from others her age due to learning disabilities since kindergarten. We have been homeschooling for last 6 yrs. And she has accomplished make your tasks that public school simply could not provide to her. I am looking for a social group familirs with chd children we can do life with. Even if it’s just for a dinner, or outing, concert, field trip. We recently moved out of our home state and are struggling to find acceptance as well as friendships!! Please help any recommendations. Ty!

    Avatar photo
    Rachel Camper February 19, 2018 at 11:11 am

    Hi G and me,

    Zerlina is going to contact you directly. Thank you for reaching out!

Prasanthychinnareddy October 18, 2021 at 3:29 am

Thanks for sharing the information. I am really glad to read this information about your children. I know how important pediatric consultant for today’s generation.

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