1978 - 1999

A beautiful life that came to an end

He lived as he died, everyone's friend

It was Superbowl Sunday, January 31, 1999. Our 20-year-old son, Dwayne, the fourth child in our family of five, had rented the ice at our local arena and played hockey with his friends. He came home and died in his sleep. Nothing could have prepared us for the devastation. The preliminary autopsy the next day told us he had aspirated but we would have to wait for results from the forensic laboratory and pathology. Three months later we were told that the forensic lab had found nothing and we would have to wait for pathology. Seven and a half months after our son's death we received the final autopsy report stating that cause of death was "asphyxia due to aspiration of gastric contents". Dwayne's cause of death made no sense.

Coincidentally, my husband had suffered a cardiac arrest in 1996 and had an Implantable Cardiac Defibrillator implanted, in 1998, the year before Dwayne's death.

Our son was a 6ft 3in, 200lb young man, who loved everything about living, was in good health and worked out regularly at the gym. He should not be dead. My search on the Internet for possible answers led me to The Canadian SADS Foundation. I had a long talk with Pam Husband and learned that her son had died in his sleep too.

With encouragement from Pam, I attended the medical conference hosted by The Canadian SADS Foundation in Oct/99. I was intrigued by the information presented by the speakers at this conference. It had been only nine months since Dwayne's death and I was an emotional mess but I could not leave the conference without asking about his cause of death. I had an opportunity to question Dr. Jim Cairns, Deputy Chief Coroner of Ontario. He explained that "a generally healthy person does not asphyxiate in his sleep unless there is an underlying condition, i.e. a cardiac arrhythmia". Based on this information I requested that he provide me with a second opinion. He agreed.

Dr. Cairns had two cardiac pathologists investigate my son's death and a few months later we were told that he had died from arrhythmogenic right ventricular dysplasia (ARVD). We now had an answer but were devastated all over again. The rest of our family had to be tested. This is ongoing as I write and we still don't have all the answers. We are trying to pick up the pieces of our lives and go on.

I am indebted to The Canadian SADS Foundation for the support I received throughout our ordeal and especially to Pam Husband and Nancy Busse for their ongoing caring and encouragement.

Submitted Spring 2001 by:

Iris Walsh, Dwayne's Mom

Mississauga, Ontario

Update December 2006:

Following the news that our son had died from ARVD our three other sons, my daughter, Ashley, and I were tested. Ashley, who was 12 years old by then, became a patient of Dr. Hamilton at Sick Kids Hospital in Toronto. Initially she had the electrocardiogram (ECG), a signal averaged ECG, an exercise stress test, cardiac MRI and a 24-hour Holter monitor She continued to have tests on a bi-yearly basis. Something showed up on the signal averaged ECG but this was not sufficient to meet the diagnostic criteria needed to confirm ARVD, see www.arvd.com. This led to the need to have a heart biopsy in the summer of 2006, just before her 18th Birthday. At that time her DNA sample was sent to St. JohnsHopkins Hospital in Baltimore, Maryland which now offers clinical genetic testing for plakophilin-2, one of the genes identified with ARVD. Her results show she has the gene. At this time, the rest of our immediate family has agreed to DNA testing.