Living with Long QT Syndrome has heightened our awareness and sensitivity towards others who deal with similar high-risk living. We are a family of four who lives 40 minutes north of Kingston, Ontario in a small and beautiful rural town called Westport. I am a mother of two active boys: Taylor 13 and Jacob 10. My two sons and I have been diagnosed with Long QT Syndrome.
The big discovery came when Taylor was born. Due to complications and a difficult labor, he was admitted to the NICU of the hospital and was soon diagnosed with LQTS. In an attempt to answer the "whys and hows" of Taylor’s diagnosis, I was given an ECG only to discover that I, too, had this condition. A review of my medical history revealed one unexplained fainting episode in my late teens and numerous episodes of lightheadedness and blurred vision, especially when nervous or frightened.
We consider ourselves to be very fortunate to have had an accurate diagnosis and appropriate treatment for our family. My sons and I are on beta-blockers and, to date, have been non-symptomatic. We experience side effects from the medication, but that seems a small price to pay.
Medically, we’ve been blessed with a pediatrician and cardiologists who not only are well educated about LQTS, but also who have been a great support system. Because of the numerous drugs that interfere with the QT wave, and because of the greater risk associated with surgery, some common procedures and treatments have not been an option for us. Our doctors have continued to provide us with excellent ongoing medical treatment.
Another integral part of our support team has been the education and support we receive from The Canadian SADS Foundation. Through this organization, we’ve had the opportunity to attend workshops and conferences and to speak with physicians who are outstanding in this field.
We are a very active and sports-oriented family. We live in a rural community where sports play a large part in people’s lives. Every day we struggle with decisions about what sports the kids can, and cannot, participate in. Taylor is an avid hockey player and just completed his first year of contact hockey. With Dad on the bench coaching, it gives us a small sense of security and the ability to monitor closely.
Currently it’s Track & Field season at school and, again, we have to closely monitor which events our sons participate in. The onset of a new sport season always brings the issue to the surface and forces us to step back and reassess. We feel like we constantly walk a fine line between letting them enjoy life, to do the things that kids do, and making sure that we don’t take unnecessary risks.
We have consistently tried to educate the boys about LQTS, about the importance of taking their medication and how to self-monitor for signs of faintness. Occasionally they’ll ask "Why do I have to take these pills when I feel fine?" or "Will there ever be a time when I won’t have to take pills?" We hope that medical research will one day be able to provide us with the answers to these questions, but in the meantime, we will continue to trust in God and pray that this silent killer will never affect our family.
Submitted Spring 2001 by:
The Lynn Family
Westport, Ontario