Susan Busse Read
On May 28, 1998 after much preparation our dream vacation began. Little did we know it would be become our worst nightmare. We had rented a special needs' houseboat on the Shuswap Lake to accommodate our rather large family. Our family vacationers included Grama Peggy & Grampa Bill in their 70 & 80's, Mom (Nancy) & Dad (Terry), the seven young children still remaining at home, 2 older bachelor brothers, (Ed) and (Kelly), and our married daughter, Susan, with her husband, Gordon, and our grandson Jeffery, almost 2 years old.
Everyone was so excited. The boat couldn't have been better and the weather was just perfect, sunny and bright; even the lake had cooperated and was fairly warm.
We cruised off down the lake and the all kids had a blast going off the slide and jumping off the boat. The big guys did their fishing and, despite my reservations about combining all those different personalities under one roof, everyone got along really well. As a matter of fact, the last entry in our vacation journal made note of everyone being happy and nice to each other and the writer finished the statement with a question mark?
On May 30, after having enjoyed a huge family breakfast, Susan announced she was going to lie down for a nap. She thought she might be pregnant but it was too soon to be certain although the smell of oranges definitely turned her face a ghastly green color.
We had decided to go down the lake to our favourite sandy beach cove where we had been countless times before. The little ones settled down to complete homework that had been assigned with the bigger kids helping. The bachelors danced about on the top deck. Several times that morning our grandson Jeffery wanted various things from the room where his mom was sleeping, like his hat and his special blanket, etc. Each time Jeffery’s Grandfather, Terry, had tiptoed in and retrieved the desired item being careful not to disturb his sleeping daughter.
At approximately 11:30 AM Gordon, Susan's husband, decided to check on her so she didn't sleep too long and out party the rest of us that night.
He howled out her name in anguish; a sound that will remain in our memories forever and screamed for someone to call the paramedics. She wasn't breathing and had no heart beat. Her eyes were blank and her mouth was open with a smear of vomit across her cheek. How could this be happening?
Gordon started mouth to mouth and I began chest compressions. Jeffery was handed off to one of the teens, screaming, crying and totally confused. Terry used the radio to call for the paramedics. The others hurried to get damp cloths that we had requested in order to clean her mouth and nose and make a better seal for mouth to mouth. In an effort to do anything they could for their sibling, they grabbed everything they could and got it wet. They were so determined and dedicated to helping their sister that these siblings provided enough wet material that the paramedics would later ask if she had been swimming.
Those who weren't trained in CPR got a crash course. Everybody did everything that could possibly be done. Unfortunately, the spot we had chosen on the lake was in a remote area meaning that help would be long in coming. Although houseboats are not designed for speed, we turned the boat around and gave it full throttle.
It was 45 minutes before the paramedics arrived at our boat. This was a very long time to do CPR. The paramedics assessed her and she was loaded onto a speedboat. Gordon and I accompanied them and continued doing CPR. Everything was happening so quickly that as we left, we realized our load was too heavy near the back and we almost flipped the speedboat over, much to the horror of the rest of the family standing watching us depart.
It took about 15 minutes to arrive at Anglemont where the helicopter could pick her up and where other volunteer paramedics were waiting. They cared for her on a picnic table beside the beach and kindly provided a patio table umbrella to protect her from the blazing sun that day. Another 15 minutes elapsed before the helicopter arrived to take her to Salmon Arm hospital.
What a vulnerable, helpless feeling we experienced; no shoes, no money, no glasses for myself and totally dependent on others. The kind people of Anglemont worked tirelessly on Susan and were kind and understanding to Gordon and I. Susan was then loaded into a helicopter to be transported to a hospital. There was no room for Gordon and I in the helicopter, so we clutched her green terry towel robe and hurried back down the lake in the speedboat and gratefully accepted a ride to the hospital.
When we arrived at the hospital, we were ushered into the dreaded tiny room reserved for such occasions. Susan had never regained a heartbeat or breathing and was dead. The doctor who broke the news to us told us they would perform an autopsy to determine the cause of death. I remember thinking that it wouldn't change the outcome. Why bother, but because the death was unusual it had to be done.
We also had to be interviewed by the local RCMP and, although they were very pleasant and professional, it was a very uncomfortable experience. Each person would have to be questioned as to the events of the day; a difficult task with a group our size. Eventually, they decided not to interview the grandparents and the younger children.
The doctor at the hospital wanted to speak with Susan's family doctor in the hope that he could shed some light on what may have happened. After all, this was a 23 year old woman who other than asthma was extremely healthy. She didn't smoke or drink alcohol and she exercised moderately and took very good care of herself. In fact, she had seen her family doctor just 2 weeks before the trip and had received a clean bill of health.
We returned home with one less person in our group. The journey had begun with 16 excited people in assorted vehicles eagerly anticipating our trip. The journey had ended with only 15 devastated, confused, bewildered people preparing to go on somehow.
Our lives were completely changed forever. Gone was our bright, bubbly, enthusiastic, loud, exuberant, wife, mom, daughter, sister, granddaughter, friend and soulmate.
We learned that the initial autopsy revealed no physical cause of death. We were told that further testing would be done and this could take several months. The coroner cautioned us that we might never find the cause of her death.
Her family doctor spoke with the medical professionals in Salmon Arm and asked them to check out several possibilities such as pulmonary embolism, an aneurysm, etc. but her death remained a mystery. It took 4 months to come to the conclusion that the cause of death was officially listed as "not determined." That answer left us dedicated to finding a cause.
While watching TV one evening we saw a sudden unexplained death profiled and learned about Long QT Syndrome. We searched the Internet and explored the Long QT Syndrome and took the information to our family doctor who said it was worth looking into. It might have been the cause of Susan's death.
He ordered EKG's for me, my husband, and the biological children because the syndrome is thought to be genetic. Our EKG's revealed that Long QT Syndrome was not evident but it can apparently be difficult to detect.
However, the tests did reveal an abnormality that is believed unrelated to the syndrome but bears further checking and affects my husband and all the biological children. The test results ordered by the cardiologists came back abnormal within the normal range.
We contacted a group called The Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation. We were told that there are many unexplained deaths each year. My informal survey suggests that on average every coroner reports one unexplained death per month across Canada.
It is believed that once a coroner can find no cause of death that it is the end of the road. For us it is not that simple. We need to know what happened to Susan, not only for her and ourselves, but for the safety of the other siblings, her son and perhaps her extended family who may be affected. If we can stop this from happening again we must. We have heard of too many unexplained deaths to think this is an isolated experience. We believe there may be others like us.
Our story was published in many local newspapers and had a huge affect on awareness, particularly in Alberta. I would urge each of you to share your own personal stories so that more Canadians will be educated about cardiac arrhythmias. We hope that by sharing our story with others with similar experiences we can discover what is happening to so many young lives.
UPDATE, July 2001
It has now been more than 3 years since our daughter Susan died unexpectedly and with no cause and to date we still are not certain of what caused her death but as we continue to search for answers we are encouraged and inspired by those we have met along this journey.
The support and information we received from The Canadian SADS Foundation; especially Pam Husband has been fantastic. Not only did Pam help with our own personal situation, she has also assisted many other Alberta families. Pam encouraged many of us here in Alberta to form The Alberta Chapter of The Canadian SADS Foundation in order to promote education and awareness at a regional level. The Alberta Chapter is doing great - thanks to the many enthusiastic, dedicated people working towards education and awareness.
Special heartfelt thanks go to Katherine Timothy who continues to research our genetic background in the hope that we can prevent this from happening to other family members. Maybe someday we will have answers or maybe not but at least we will know we tried our best and along the way perhaps other people will benefit from the research.
Submitted by Nancy Busse, Susan’s Mom
Edmonton, Alberta
Nancy now serves on the board of directors for The Canadian SADS Foundation.