February is the month that is full of love and chocolate. It is also the month in which we bring awareness to the many cardiovascular diseases that have no discrimination in age. Specifically, I want to talk about Adeline’s special heart. She is a CHD child with a rare condition.
Our journey started back in the summer of 2017. We took her to get her ears and nose checked with an ENT specialist due to abnormality in her breathing while sleeping. That consultation resulted in Adeline having large adenoids that blocked her breathing while she slept and a thorough ear cleaning. We went to a pre-operation visit with her pediatrician. To our surprise, the doctor heard an abnormality with her heart, which she said could potentially be a heart murmur. She then sent us to consult with a cardiovascular pediatrician. I made a few calls with open appointments a month out. It was upsetting how long one has to wait to see some of these doctors. I finally got through with Children’s Heart Institute, which was able to see us within a week of her pre-operation visit.
The Children’s Heart Institute has been so amazing to us, especially Dr. T. Dr. T found what is called a Right Coronary Artery Fistula. What this means is that she has a defect in her coronary artery that, instead of connecting to a coronary vein, incorrectly enters a heart chamber. The only sign of this condition is having a heart murmur detected. The enlargement of her artery could result in her suffering from shortness of breath, fatigue, chest pains, or irregular heartbeats. What this meant was that she would need to have a catheter procedure to plug the connection.
Receiving this news was shattering. All of this was foreign to us. Thankfully, we had my wonderful sister-in-law explaining in less medical terms what all of this meant for Adeline. How this went undetected for almost four years is still mind-boggling to me. Nevertheless, I am so grateful that the detection came at that time rather than later. She had her procedure scheduled in November 2019, and if you have ever had your child go under anesthesia, it is never easy. The procedure went beautiful, and now she roams around this life with a little plug in her heart.
Fast forward three years later, her artery still hasn’t closed to what the doctors have hoped for, so we have EKG’s and sonograms done every six months to continue to monitor her warrior heart. She will have to have to take a small dosage of aspirin for the rest of her life and will have what we hope is yearly visits as she gets older, once the artery closes. Our next step is stress testing at eight years old to see the capability of her heart.
As for now, we continue to hope the plug helps her heart, and she can live a healthy, happy life that she deserves. Our heart journey will be ongoing, and we are just living it day by day — my love and prayers to those families who have babies battling CHD in different ways. I see you and know that you are doing a fantastic job.