Cortney’s Story
When I was two months old I was diagnosed with complex congenital heart disease; I was born with several complex heart defects (HRHS, DILV, CoA, TGA, ASD, VSD, PDA).
In basic terms, the right side of my heart was underdeveloped and, therefore, it is said that I am a single ventricle heart warrior who lives with half-a-heart. I went through four heart surgeries between the ages of two months old and eight years old. One of the surgeries I had was called the Fontan procedure. This life-saving surgery was a new surgery at the time. Children with my heart defects who were born before me did not survive. Thankfully, the Fontan procedure has allowed me to live an extremely full life.
Although the Fontan procedure truly saved my life, it is by no means a cure. In fact, doctors are finding that as Fontan patients get older, their heart pressures are increasing, which is negatively impacting their hearts and livers. I began experiencing heart arrhythmias (atrial flutter) which was caused by my Fontan anatomy. In 2009 I had a cardiac ablation to temporarily stop the atrial flutter arrhythmias. In 2011, I was diagnosed with F4 liver cirrhosis, which was also caused by my Fontan anatomy. This basically means that my liver function is worsening more and more every moment of every day. Unfortunately, in 2021, my heart arrhythmias started up again. I had a heart catheterization to check my pressures, a cardiac ablation to try and get rid of the atrial flutter arrhythmias, and I also had a pacemaker implanted to help control my bradycardia (slow heart rate). So far my heart is stable and I am doing well.
Although I am doing well now, the arrhythmias are inevitably going to come back again. When they do come back, I may be able to have the Fontan revision surgery. After this surgery, the only option left to help save my life is a heart and liver transplant. This is beyond scary for me, and this is beyond scary for my family. Thankfully there are many doctors and researchers working hard to discover other options, and thankfully there are many generous donors, like you, who are willing to help fund the research. I am extremely hopefully that this research will help me and my fellow heart warriors live long, healthy lives. Thank you so much for taking the time to read my story and join my mission. Being surrounded by constant love and generosity helps me to live a full life despite my half-a-heart.