By MAKENNA MCCORVEY
Staff Writer
Congenital heart defects (CHD) are abnormalities in the function or structure of the heart that is present at birth. There are 18 main defects and many to be discovered. I have Pulmonary stenosis, Transposition of the Great Arteries, Ventricular Septal Defect, and Double Outlet Right Ventricle. Many children with CHD have to have surgery in order to survive. I have had 3 open heart surgeries including, the Restelli, the BT Shunt, a patch over my vsd, and an Arterial Switch. This slur of big words may sound foreign, but every 1 in 100 babies born in the United States are diagnosed with some kind of congenital heart defect. Many heart defects can be detected in fetal echocardiography, which creates a picture of preborn babies’ hearts, and a cardiologist can look at the image and diagnose a baby before they are born. But still, there are many babies who go undiagnosed until it is too late. There are 100-200 deaths per year due to undiagnosed CHD, and this is only in the United States! Imagine living in an underdeveloped country! There are little to no resources to diagnose or even “fix” the problem. And speaking of “fixing” the problem, there is no cure for CHD, there are only temporary solutions. 25% of children with CHD have a critical case that requires surgery in order to survive. In my case, I was undiagnosed until I was two days old. My mother had realized that I was blue and struggled to breathe.When she demanded that another doctor see me, he was astonished by how I was still alive. My heart defect is what you would consider critical, so I was rushed to another hospital where I had my first open-heart surgery. My mother was still in the hospital when this all happened. Imagine your newborn baby rushed (without you) to another hospital and receiving open-heart surgery within a day of giving birth. This horrific story isn’t just mine. It’s the story of many families that have children affected by CHD. And many don’t realize that CHD is ongoing, as I said before, there is no “fix”. There are repairs but, CHD affects a family for a lifetime. In my case, I had a valve replacement and my conduit won’t last forever. Many have to continually get valve replacements as time goes on. I have been incredibly blessed to be born in a time of such great technological advancement because I am a candidate for a Melody valve. This valve can be put in through catheterization and requires no open-heart surgery. Not only does CHD require a lifetime of surgeries and cardiology appointments, but it affects your everyday life. As a teenager this means not being able to play all sports, being too tired to hang out with friends, not being able to go on roller coasters, thinking about health insurance, and knowing the closest hospital to your dream college. It is not all bad living with CHD, but many babies aren’t able to even survive. CHD is the leading cause of death in infants, higher than the number of children (18 and under) dying from cancer. Yet, you don’t see advertising for it, no celebrities are endorsing our cause, even google lacks content on CHD. This is ridiculous and sad. We may not always look sick, but CHD is still affecting us every single day of our lives. I grew up going to a camp for kids with CHD and I had always looked up to my mentor, Sarah, who was a teenager with CHD and was about to go to college. She looked healthy and seemingly was doing great. While Sarah was setting up her dorm she had passed out and her heart went into failure, she passed away that day. This was devastating, many girls looked up to her and saw her as a hope of our future. Her sudden death caused hope to dim. Since then I have lost childhood friends, campmates, and counselors. This devastating reality only saddens me more to see a few people educated on this issue. As February rolls around (CHD awareness month) I encourage you to look into CHD and spread awareness. There is always hope where people are informed and educated. For more information visit, https://mendedhearts.org/
