November 4th , 1981 - October 17th, 2000
Everyone wondered what the Millennium would mean or bring to each of them. There was great anticipation for the stroke of midnight. Some believed it would be the end of the world or at least the possible crash of all computers. It wasn't then that my world ended but rather at 3.20 pm on Tuesday October 17th, 2000. You see, that is exactly when I was told that "My Matt" had died. Matthew had been attending his first year of College at Sir Sanford Fleming in Peterborough. I had spoken to him for what would be the last time on Saturday afternoon. He had shared his week of activities with me and then we ended our conversation the way we always did with exchanged "I love you's".
Dr. Thompson from Peterborough called on Wednesday morning with the Autopsy report and told my husband that Matthew had died from Congenital Heart Disease and that his right ventricle was enlarged four times the normal size. I remember reading the words on the note my husband had written but I don't think I truly understood what it meant - All I knew was that my first born son was gone.
About two weeks after Matt's death, I called Dr. Thompson because I needed more answers about the cause of Matthew's death. He told me that final results indicated that Matt had died from Arrhythmogenic Right Ventricular Dysplasia (ARVD). I had no idea what ARVD implied or what it would continue to imply for the rest of my family. Dr. Thompson strongly suggested that our other 2 children, my husband and myself be tested.
In retrospect I now know that Matthew's body was giving us every sign that there was something wrong. He had his first dizzy spell in church one Sunday morning when he was about 13 ½ years old. We assumed that his dizziness resulted from the day being hot and the church being full and stuffy.
There were other signs and things that Matt complained about. I remember the day he asked me "if my heart ever felt like it skipped a beat or if it ever beat so fast that it felt like it was going to pop out of your chest". I took Matthew for a check up because I was concerned that Matt was having these feelings in his chest because he was born with a pigeon chest. Ex rays suggested there was plenty of room in his chest for his heart and lungs and that his sunken chest was not relevant.
When Matthew had a dizzy spell at work, one onlooker who was a paramedic said it looked as though Matthew was having a heart attack. I again took him to his Dr. who quickly sent us to CHEO in Ottawa to the cardiology unit. Matthew was given the "Head Tilt Test" and we were then told his problem was something called "Syncope", a fancy name for a "Fainting Disorder". We were told that Matthew was border line and did not need a beta blocker drug but to increase his intake of salt and fluids and insure plenty of rest. From that day on we accepted these dizzy spells and referred to them as "Matt's Fits".
"Matt's Fits" didn't stop but as he got older I think he just stopped telling me about them. We accepted them as part of Matthew's makeup and believed that they were something he would have to learn to live with. Little did we know that these fits were slowly taking his life right in front of our eyes. The last episode I am aware of was in August 2000 just before he left for College. He was sitting at his computer at work and his face went completely white. We both knew it was one of his fits and so I drove him home to sleep it off as I had done so many times before.
Writing this letter brings back so much of my anger. Why didn't we ask more questions? Why did I accept what the DR. told me in Ottawa? Why didn't they catch this ARVD thing? Why, why, why…? I don't have all the answers today but thanks to The Canadian SADS Foundation and Pam Husband I am learning what to ask and how to try and cope.
This nightmare is far from over for our family. Since Matthew's death we have all been tested for ARVD and my husband Charlie , my son Trevor 16 years and my daughter Lindsay 14 years have all been told that they too suffer from the same disorder.
There are still so many unknowns about ARVD. What is the level of risk for each individual? What is the progression rate of the disease and when will it strike? It has been recommended that Trevor and Lindsay take heart medication and have a defibrillator implanted. This news has been very difficult for the children to come to terms with and they are now in the process of making their decision.
Our lives were and remain forever changed since Matthew's death but we work hard everyday to try and live as he did: full of life, non judgmental, and making the best of the day you have before you. His best friend said to me a short time ago "Matthew, out of everyone of us, was the one who was most ready to live, yet he was also the one who was most ready to die. Matthew never wasted a day of living, he did simple things just because he could."
I now live my life keeping in mind how he lived his.
Always Matt's Mom
Angie Baker / Cornwall
Submitted Spring 2002