According to the American Heart Association, Congenital heart defects result when the heart, or blood vessels near the heart, don’t develop normally before birth. Although it is a birth defect, these sometimes go unnoticed until the child gets older.
When I hear of congenital heart defects (CHD), I think of the little babies. I think of the defects caught in utero, after birth and sometimes even toddler years. I even know about some of the life- saving surgeries that must be done for that child to survive CHD.
Truth be told, I thought we knew a lot about the faces of CHD. That is, until my husband Greg and I found ourselves sitting in the Vanderbilt Cardiology office with our fourteen-year-old, teenage daughter, Anna Grace, on March 13, 2018.
Anna Grace had been complaining of some chest pain that was bothering her. We went to the pediatrician and the doctor heard a murmur. Knowing that this wasn’t uncommon, we still weren’t too alarmed. That was the first time anything was mentioned regarding her heart.
Three days later, we visited a cardiologist to get an echocardiogram – a real-time picture of her heart and it’s inner chambers. After testing, they explained that the muscle pain was to be treated with Tylenol, BUT they found something else... a hole in the upper and lower chambers of her heart. Due to the position of the defect, it could only be repaired with open heart surgery.
Anna Grace was diagnosed with transitional atrioventricular Septal Defect and it was a complete and utter shock. Anna Grace is everything we dreamed of as parents. She is very active, a good student, healthy, happy and fun! She is a competitive dancer, enjoys summer swim team and pageants. Just like any other fourteen-year-old girl. She was up to date on all of her yearly doctor appointments, shots, sports physicals, etc. There was never any feedback or results showing anything was even remotely alarming. She had been our picture of health.
I couldn’t help to think, ‘Why us, why now?’ There were no red flags and there were no other options for her. Congenital heart defects can be discovered anytime for anyone. Anna Grace didn’t have any symptoms. She didn’t have any signs that were screaming there was an issue.
Luckily for us, Anna Grace’s diagnosis was corrected with a full repair. While she is still on medication to help keep her heart tissue protected and heal fully, she was released in September with no restrictions. Now that her heart is fully functioning properly, she is actually performing even better than before and has more endurance.
We are so thankful we caught this before it was too late and for the amazing surgeon and medical staff that helped make her heart good as new. We know God has BIG plans for Anna Grace and spreading the word about CHD for teenagers is just the beginning.
The most recent statistic is one in 100 children will be diagnosed with a CHD. There are many heart families just in the Franklin area alone. It wasn’t until another heart family, Ellen and Bo Boyer, lost their seven month old daughter Brett to CHD that a foundation was created in her honor.
The Brett Boyer Foundation raises awareness and helps fund research to advance treatment options for those living with CHD. Alongside the Brett Boyer Foundation and Vanderbilt Children’s Hospital, we are determined to make a difference.
To learn more about CHD and how you can help the cause, visit thebrettboyerfoundation.org.
