I still remember the day Koal was born like it was yesterday. Just giving birth and hearing the daunting words that our sweet baby boy had a heart problem right away was enough to make any parent panic. At birth, Koal was diagnosed with aortic stenosis. Koal had a heart cath procedure at just 1 day old. They went in through the groin and into the heart with a balloon to open up the aortic valve. He had this procedure done again at 3 months old. After that, it was years of doctor appointments, testing, and imaging to monitor it. When he turned 15, he finally had open heart surgery to replace his aortic valve.
As he grew older, Koal struggled with getting winded when running and when he tried to play the trumpet in a band, even just regular playing. Certain medicines would cause his heart to beat extra fast which would make him not feel good. Our family moved to Orlando, Florida when Koal was about 9 years old. We decided to transition his care to the Nemours Children’s Cardiac Center in Florida.
I am not even sure how to put into words the way we feel about Nemours Children’s and our doctors! I have worked for doctors for many years, and I can tell you that Nemours has the BEST! Our doctors have become part of the family! The way they care for our children and what they stand for is like none other! We love Nemours so much that I now work with them!
Koal is thriving now! His heart is healed and we continue to work with Dr. Ameneh Ebadi, pediatric cardiologist, to keep him healthy. His diabetes is under control, and he is currently taking classes in high school to become a certified welder!
For families going through a similar situation, I advise you to trust your doctors! Find groups and blogs on the internet to talk with other families and other patients who are going through the same thing. Most definitely look into Camp Boggy Creek! It will change your lives! And most of all, just be there for each other every step of the way. Share your thoughts and feelings and talk it out!
