My name is Jonah. I am nine years old and in 3rd grade.
My parents found out about my heart condition when I was born a “blue baby” due to the problems my heart caused with my blood circulation, which made me look blue in color. They were quite shocked to learn that I have a rare defect known as Ebstein’s Anomaly. They were told that I would never leave the hospital without surgery or medications.
I defied these odds, though, and went home from intensive care without needing either of these things. My cardiologist believes in miracles and waited patiently for mine to happen, because she knew that my body’s ability to manage my heart condition would need little outside interference.
This approach worked well for a while, until I developed a condition called Supraventricular Tachycardia (SVT). This caused my heart to beat very, very fast. It was scary! These attacks continued for two years and my medication stopped working, so I needed surgery. I had a Cardiac Catheterization Ablation to fix my SVT.
Now I am being watched very closely to see when my body will tell me that my Ebstein’s Anomaly needs to be fixed. When that time comes, I will need open heart surgery to repair my tricuspid valve, which is still leaking badly. They will also be able to make my right atrium smaller, and close the hole I still have in my heart.
Right now, you would never know by looking at me that I have a special heart. Not only is it big in size, but it’s also big with love!
RETURN TO KIDS WITH HEART HOME PAGE