As a survivor, volunteer, advocate and staff member – I wanted to share my story.
I was recently featured on a Children’s Health Link special on our local NBC affiliate, KING5, with a story that highlights me as an 11 year old volunteer and fast forwards to where I am today. Please take a look and how far I have come and what the future holds!
Twenty-six years ago, I was born with a severe congenital heart defect (CHD). My parents were told that I might not survive the 30 minute ambulance ride from Everett to Seattle Children’s Hospital. As would become my goal in life, I did my best to prove the doctors wrong and to this day I still try to prove them wrong in the way I accomplish things they never believed possible. And always by my side, helping me achieve this was medical research and technology.
It seems that over the years, technology has always been one step behind me, as soon as I would need a new repair, it was found to be possible for pediatric use right in the nick of time. I have always been in the right place and the right time of technology and my next procedure is no different.
As I transition from pediatric to adult care at the University of Washington Medical Center, we are looking at my condition with fresh sets of eyes and new technology possibilities in hopes of avoiding a heart transplant which I have been awaiting for the past five years. A new pacemaker to improve my heart function could be the answer, but with my complex anatomy, my doctor thought it might be more difficult to place a new wire to the opposite side of my heart.
I had recently heard about research using patient-specific 3D heart models to practice cardiac ablations, so I asked the doctor if it might be helpful in my case. He was quite excited that I had suggested this and about a month ago, I underwent a cardiac CAT scan to start the process. I should be receiving my new pacemaker sometime early next year once he masters the procedure.
This technology and the possibility of me having better heart function and quality of life has been eye-opening and I again realize just how important the work we do at the AHA is. I have always had a passion for our cause but knowing that advances in medicine every day could lead to a better outcome for patients like me is what drives me.
Thank you to each and every one of you for supporting our mission, it means the world to me and every other CHD, heart and stroke patient out there!
For the full story, please click here.