1 in 100 babies are born with CHD
My journey with complex congenital heart disease (CHD) began at birth. 1 in 100 babies are born with CHD. My first heart surgery was at two days old and then again at nineteen months old. I was the fifth baby at that time to receive the interventional heart surgery that ultimately saved my life. Growing up, though I had some physical limitations, I managed to have a fairly normal childhood aside from regular hospital tests and monitoring. I graduated from high school and then completed my university education in criminology, worked fulltime, traveled, got married and had my son.
A year and half after having my son, my health deteriorated leading to some near-death experiences with code blues and nine more heart surgeries. I am essentially held together by cow parts, machines and pills. I will not deny the lifetime struggle and difficulty living with CHD and heart failure. The mental and physical mountains are quite huge at times. I’ve lost multiple young friends to this disease. I needed to find a way to cope with it all and that’s where I started advocating awareness, attending heart conferences. I conducted speeches at UBC University for first year medical students, organized and grew the first congenital heart warriors walk in BC for patients and families until my health further deteriorated. I had to step back and focus on my health and survival. I felt like I lost myself again.
Since then, I adapted and found another way by finding amazing support groups like HeartLife and participated in two trail surgeries. Not only did they provide me with the help and survival options I needed, but helping to shape further research and innovation for others helped me to continue using my trauma for something good and worthwhile. I am now starting transplant assessment which is terrifying. I hope that with my family and the support networks I have made, I am able to get through what’s probably going to be the hardest thing I’ve ever had to do yet. All I know is that I need to continue showing my son that with some resilience, faith and determination, you can face anything. I will fall apart sometimes and that’s ok, but I will always keep fighting.
