Our journey with Long QT Syndrome started with the sudden death of Susanne, the youngest of our identical twin daughters on February 27th, 1999. She was lining up for a ticket to go snowboarding with friends at Marmot Basin in Jasper when she just collapsed and died. She was just 25 years old.
Susie had been feeling tired and had had several episodes of morning dizziness, so she decided to go for a physical check up. The family doctor detected an irregular heart beat and sent her for an ECG. The results, read by a doctor, showed several abnormalities and so she was sent to a cardiologist where she had an echocardiogram and a Holter monitor test.
The cardiologist did not agree with the findings of the first doctor and actually said on the diagnostic form that the other doctor was absolutely wrong. The cardiologist said that the irregularities on the ECG were due to Mitral Valve Prolapse and prescribed antibiotics to be taken before having any dental work done. He suggested that if Susie's symptoms really bothered her that a beta blocker could be considered for the symptoms. Her symptoms did not bother her that much, so no medicine was prescribed and we left happy that there wasn't anything we needed to worry about. Never had we imagined that our six-foot tall, vibrant daughter, who three years earlier had graduated with an honours degree in Business, loved life and excelled at sports (especially volleyball) was walking around with a life threatening arrhythmia.
Only after her death, when her twin sister was diagnosed with Long QT syndrome, did we begin to find out about this genetic disorder that takes young lives so suddenly. Gail was very quickly diagnosed by an electrophysiologist and had a defibrillator implanted shortly after. She now takes potassium, magnesium and a beta blocker. Her sister's death and her own diagnosis have been devastating blows to Gail and she has had to work through overwhelming sadness.
It has been a little over two years since Susie's death and Gail is now married and lives in Ottawa with her husband Sean, where they both work as pharmacists. We all struggle with Susie's death on a daily basis and there are no words to describe how much we miss her and all the hopes and dreams we had for her. She also had two brothers. Paul is doing a masters degree at the University of Calgary and Andrew lives with his wife Christie, and their two little children, Logan and Robin Susanne, in Edmonton. As for Gail and Sean, we hope that the baby that they are expecting in October will bring them some joy and hope for the future.
Submitted Spring 2001 by:
Jenny Thistlethwaite, Susanne's Mom