Shelagh Ross – Getting Involved Locally and Globally
This profile is part of the Global ARCH Storytelling Series to celebrate our members, their personal stories, and the work they do to help others.
I was born in Toronto, Canada in 1962 with tetralogy of Fallot. I had surgery at age 2 to keep me going long enough for open heart surgery, which I had at age 8. I was cold, tired, and sick a lot, but tried to keep up with my older brother and sisters. After surgery I rode my bike, played tennis and skied, had friends, and took my dogs for long walks. I graduated from the University of Toronto with a degree in English and Philosophy.
My family doctor referred me to a cardiologist for a check-up and for the next 12 years I had an annual ECG, stress test, and echo and was told I was fine. I married and had a successful pregnancy and delivery, without any heart care. Then, 25 years after my open-heart surgery, I awoke one morning my heart beating incredibly fast and it was shocked back into rhythm in the ER. I never knew that I might have heart problems in the future, or there was an adult CHD program in the same city, or that I and my unborn son may be at risk. That episode of ventricular tachycardia led to a pulmonary valve replacement. If I, proactive and careful about my health, could so easily fall through the cracks near the largest adult CHD program in Canada, could this be happening to other people too?
From patient to patient-advocate
A few years after surgery I was invited to a meeting held by my cardiologist, Dr. Gary Webb. Until then had never met another person with tetralogy of Fallot or any other CHD. He said that the Toronto clinic was at risk of closing due to funding and that we, the patients, had to start advocating for ourselves. So, I and 3 other patients started the Canadian Congenital Heart Alliance, a wonderful non-profit that I was involved with – as vice-president, president, and first executive director – for 11 years.
I was then invited to be a member of the organizing committee for the first International Congenital Heart Leadership Summit, and then became a founding member of Global ARCH. Learning about CHD globally, and rheumatic heart disease (RHD), has been a learning curve and eye-opener. The heart care we take for granted in Canada and elsewhere simply doesn’t exist in 90% of the world. It’s been humbling and rewarding to both share what I’ve learned, and learn from others to help make a positive impact.
I’ve been working hard behind the scenes at Global ARCH. It’s been a lot of fun and rewarding and I’ve met the most amazing and inspiring people along the way.
Congenital heart disease lasts a lifetime
My health was good until 5 years ago when I started having arrhythmias requiring multiple procedures, an implanted defibrillator (ICD), and heart medications. It’s hard not to feel sad and grief stricken when life changes like that; I still really miss the “old me” invincible me. The first cardiac ablation I had was the same day that surgeries were halted due to COVID, and for the next 2 years my son made several trips from the other side of the country to visit me in the hospital. My siblings were stuck behind their province’s closed border and my 90-year-old mother lived in the United States. I was in and out of the hospital and she was dying of heart failure. I have found being an adult with CHD is so much more stressful than it was as a child – managing work expectations and deadlines, overseeing a household, paying bills, and all the hundreds of details that are part of being a grown-up. During my last Toronto hospitalization for a 4th ablation, and still during the COVID lockdown, my wonderful mother died. She was my biggest champion, and I was so sad that I couldn’t be there for her when she needed me. That was probably the lowest time of my life.
Working together to build a common voice is the way forward
Two years ago, I made a monumental move across the country with my husband and 2 dogs to be closer to my son and the ocean. We have a beautiful old house surrounded by roses and fruit trees and I’ve been spending my spare time fixing it up. I see my new ACHD team in Vancouver and I feel very fortunate to live in a beautiful place in a country with universal healthcare, even if it isn’t always perfect.
I love working with Global ARCH because it’s focussed on developing partnerships with allied organizations and collaborating to achieve our common goals. I get to work with people who are making a big difference in their communities. Worldwide, there is an urgent need for increased CHD research, support, awareness, and professional recruitment and training. I believe that working together and building a common voice is the best way to create the change we need: equal access to affordable lifelong specialized heart care, mental health support, and social programs and policies addressing disability, discrimination, and equal access to education and employment.
Global ARCH is a great organization! We’re always looking for donations so if you’re interested please click here.
