I want you to meet Christine, whose mother is one of the many people on this road of life with us.
“My daughter died at 33 years of age from Heart Disease. It was a sudden death, preceded by no symptoms. It was August 14th, 2004”
Carol writes in an email to me and I can actually hear the pain in her words. How do you even begin to tell someone about the day your daughter died? I continued to read the story, tears already in my eyes. Christine was on a holiday with her partner and her then 11-year-old daughter Carley; they stopped in a store in Ellsworth, Maine to get Lobster to bring home. She collapsed in that store, and though they tried, five doctors could not revive her. She was pronounced dead at 6:00 pm that night.
Carol, Christine’s mother was just arriving at Christine’s sisters house in London Ontario, when she received the call that would break her heart and change her life. The mother and daughter got into the car and made the long journey back to Oshawa, trying desperately not to cry so as not to be a danger on the road. “I remember thinking; this has to be a dream and I will soon wake up, but it was not a dream.” Practical issues needed to be seen to, harsh realities faced. How did they get her home? When? The coroner needed to preform an autopsy, delaying Christine’s return home. Flights were arranged, her organs were donated, and finally on Tuesday August 17th of 2004 Christine was brought home. Her funeral was days later, on the 20th of August.
“I felt like I was floating through these days of mourning and grief. Only God and His loving compassion sustained us. So many people came to the funeral home to give us their love that the line was all way out of the room and out the door of the funeral home. The church was packed with all who loved her”
Carol, like so many other people who have felt the devastating impact of heart disease had no idea why this had happened. Christine had been a young, healthy woman who exercised, took long bike rides, took dance lessons her whole life and ate healthy. How had she died so quickly, with no warning, and so tragically young?
When writing Christine's story I asked Carol what her daughter enjoyed and loved in life she responded with this:
"My first thought is her daughter Carley whom she loved immanency. Christine had Carley as a single Mom. It is hard to remember these things so let me try. Her black Jeep that she had bought one year before was certainly a joy in her life and her daughter purchased one almost the same just last summer. She took Carley and Terry (her partner) on rides through mud trails where they would come home covered in mud but laughing!! She loved to cook too and so did her husband/partner Terry. She loved to dance. She took ballet, jazz, and tap as a teenager and was taking belly dancing when she passed. I have a movie of her during a recital that her class did - they were all mature women and Christine was working with another dancer to do a duet but it was never performed. This woman spoke at her funeral and so did her dance teacher. She had just purchased 2 taxi plates and was running 2 taxis in the same taxi firm (City Wide Cab) that my husband is part of owner here in Oshawa. My husband tells me she was obsessed with becoming a strong business woman and she spent every Sunday afternoon with my husband in his home office discussing and figuring out her business strategies etc. Actually I would say Christine loved life! She loved nature so much. We camped in Provincial parks as our summer holiday every year and Chris carried this on too. She treasured going for long bike rides and walks outside especially along the lake shore. The house she purchased was one block north of the entrance to the bike path extension that follows the lake shore at the Whitby entrance. So her house was a great prize for her as it connected her closer to nature. It backed onto open fields belonging to Whitby General Hospital that extended down to the lake where the Ontario Psych Hospital is located."
It was a year later that the family finally received some answers, and those answers in some ways brought some closure but also many more questions. Christine had Arrhythmic Right Ventricle Dysplasia; ARVD stands for Arrhythmogenic Right Ventricular Dysplasia. Arrhythmogenic means causing an arrhythmia. The right ventricle is the chamber of the heart that is affected and dysplasia means there is an abnormality of the structure. ARVD is a specific type of cardiomyopathy (a disorder of the cardiac muscle). Simply put, ARVD is a genetic, progressive heart condition in which the muscle of the right ventricle is replaced by fat and fibrosis, which causes abnormal heart rhythms. ARVD is estimated to affect one in 5,000 people. The disease can affect both men and women. Although it is a relatively uncommon cause of sudden cardiac death, it accounts for up to one fifth of sudden cardiac death in people under the age of 35.
This is a disease that can be managed, with early detection lives can be saved; in fact, if caught and treated very few people will die from this disease. Dr. Hamilton at sick kids is making proposals to the Health Ministry to have all children who are entereing serious sports to have an ECG to check for this disease. Of course an Echocardiologist would have to read these ECGs too but so far they are not yet willing to fund this.
Christine’s death does not need to be in vain, the point of this month is about spreading the word about all types of Heart Disease and CHD’s. We can’t help those we love if we don’t know what lies in the shadows.
"I will never forget what she said or what she did, but what people remember is how she made them feel. She had a way of putting people at ease with her gentle loving way. People loved her. I loved her.”
(Since posting this an error was noted by Carol - this is the following information that she has passed along to me) I do apologize for getting this wrong. Please note:
The cardiologist that Dr. Hamilton is and those who would have to read the ECGs is an electrocardiologist not and echocardiologist. Actually he is referred to as a
Cardiologist who specializes in electrophysiology of the heart. ARVD is a disease of the electrical system of the heart. The electrical fibers (Purkinje fibers)
Run through the Heart muscle therefore this comes under the heading of a cardiomyopathy (myo means muscle and pathy means disease)