Family Stories

Alexa

Alexa grew up as a healthy, talented athlete who excelled at every sport she tried from a very young age. Hockey was by far her favourite activity. She would happily devote many hours to training, shooting pucks, and planning plays. She was a natural goal scorer and her strength was anticipating how the play would unfold. Her ultimate goal was to play for Team Canada.

Despite being offered a scholarship to the women’s hockey team at Laurentian University, Alexa decided to go to Brock University to attend the Sports Administration Program.

She was devastated when she failed to make Brock’s women’s hockey team. After much reflection she decided to work on her biggest challenge: her lack of stamina. Determination and the support of a wonderful skating coach helped her successfully improve her endurance. Little did she know, an undiagnosed inherited heart condition was worsening as a consequence of this increased training regimen.

One month after her 19th birthday, as Alexa was taking a weekend away from Brock to visit her aunt and uncle’s family, she peacefully went to sleep

for the last time. Her heart suddenly stopped beating. There was no witness, no one to perform CPR, no AED. She was found dead by her uncle the next morning when she didn’t get up as planned to accompany her cousin to a special rock-climbing competition. We were devastated.

CARE is important to our family as we’re hoping that others who also have inherited arrhythmic heart conditions, including some of Alexa’s siblings, might have a second chance if they have a witnessed cardiac arrest.

CPR and AEDs can save lives.

Ben Stanton

Ben was a 14-year-old, grade 9 student at Bill Crothers High School in Markham, Ontario. He was born with an atrial septal defect (ASD), which was repaired when he was three, a mitral valve prolapse and heart arrhythmia, but had no restrictions on his activities and lived a normal life.  He played competitive soccer at an early age and eventually became a competitive volleyball player and captained his U-15 team. His love for sport, athletics and life was immeasurable. Ben was a son, a big brother, a friend, a student and an athlete. He was a normal teenager with his own hopes, dreams and outlook for the future.

On Tuesday, March 3, 2015, Ben suffered a sudden cardiac arrest while having lunch with his friend at school.  The first responders were his friends and teachers who failed to recognize the signs of sudden cardiac arrest and misinterpreted his symptoms as an anaphylactic reaction since he was allergic to peanuts and carried an Epipen. Sabrina’s Law requires training and procedures for staff responding to an anaphylactic reaction and Ben is an example that legislated training works since he was given an Epipen and 911 was called. Unfortunately, Ben was not having an anaphylactic reaction. He was having a sudden cardiac arrest. He died in the school that he loved, surrounded by his friends, teammates, and teachers.

Ben’s official cause of death was Hypertrophic Cardiomyopathy. However that diagnosis remains uncertain and there has been debates among the different cardiologists we have seen as to why Ben’s heart stopped. Ben was seen regularly by Sick Kids and had an appointment in August before starting school that year, which showed no signs for concern. As a family, we have undergone physiologic and genetic testing at Sick Kid’s Hospital and although there was no agreed upon clear and concise diagnosis relating to exactly why Ben died, known genetic markers were identified within our family. As a result, we continue further medical testing and also now regularly carry a portable AED with us. We have ensured that schools, sports clubs, and places of employment are aware of a possible family medical condition and have a protocol in place in the event of a collapse. Since we remain without a clear diagnosis and therefore a clear treatment path, we are aware of how important it is to rely on public response. Since most people who suffer a sudden cardiac arrest don’t know they are at risk for one, we are now trying to be their voice.

In honour of our son Ben, we have hosted annual Beach for Ben family volleyball tournaments and have raised money to assist underfunded competitive volleyball athletes who have represented Canada in international tournaments. Our more recent focus has been to encourage and affect change relating to the number of

AED’s available in Ontario schools and to further promote CPR and AED training and awareness through our participation in CARE.

Like so many others, although unknown to him, Ben’s balance between life and death was a fragile one. He never took life for granted and demonstrated his desire for competition, sport and thirst for experience everyday of his life. He is no longer here to be an example for us all and so we share our story of our son’s tragic loss in the hope that we can promote the importance of CPR training, public access to AEDs and awareness of sudden cardiac arrest.

Brock Ruether

My name is Kim Ruether, and I work as an X-ray technologist in a small 25-bed hospital in northern Alberta. I am a farmer, coach, artist, BLS instructor, and had four amazing children, Tegan, Tera, Brock and Ryan.

On May 22, 2012, I got home late from work, tired and grumpy, and berated my 3rd child, 16-year-old Brock, for getting a bad math mark. I told him he’d better “get that math mark up, or it will be the last practice you will ever go to”. He left our house, sad and upset, to attend his first volleyball practice of that season.

Half an hour later, during play, he fell face down on the floor. An AED was present at the gym doors. Tragically, CPR was only initiated 5 minutes after he collapsed, and although the 911 EMD dispatcher told the callers to retrieve the AED, she never told them to use it. The AED was left unused on the floor beside him. He was rushed into emergency half an hour later, with firefighters, paramedics and RCMP performing compressions and breaths.

I took pictures, as I always did, thinking how crazy it would be to show these photos at his future wedding. Brock was pronounced dead, at 8:45 that evening, and I stood staring in shocked, horrified disbelief.

Following the investigation into Brock’s case, it was determined that he had a very high chance of survival had CPR been started immediately and the AED used rapidly. Our system failed. Brock’s death had a tragic impact on many that were present that evening, and it was discovered that the trail of failures began years prior.

Brock had an abnormal chest x-ray at age 8 that was never followed up. He had an abnormal ECG a year prior to his death at a school event, but as Brock appeared to be a young, athletic and very healthy 15-year-old, the EMS staff brushed it off as faulty equipment. Brock also stood in our kitchen, holding his chest and complaining of chest pain two weeks preceding his death. Had he been 45 or 60 years old with those same complaints, they would certainly have prompted further investigation.

We are losing our children to tragic, preventable sudden cardiac death events, and it is time to create systemic change. Heart screening must become mandatory, awareness of this public health crisis is necessary, and CPR and AED training should be done throughout every child’s schooling journey, from Kindergarten through to graduation. This will ensure that within a few decades EVERY Canadian will know how to do effective CPR, and will quickly apply an AED to  save a life.

Kale Garner

Kale was a young and fit 27-year-old man when he went to run the Scotiabank Marathon in 2011. The day before he had gotten a haircut to make himself more aerodynamic, he joked with excitement, to run his first half marathon. About 200 m from the finish line Kale collapsed. Although there were medical staff on site and CPR was administered within minutes, they were unable to restart his heart and Kale passed away.

Kale was a lifelong athlete having played sports most of his life, hockey was his passion as he played with the EG Eagles for almost 12 year. Beyond that, most evenings and weekends, he could be found playing volleyball, snowboarding, or pickup of any kind with his friends. It’s because of that passion for fitness and sports that no one thought twice when he signed himself up to run a half marathon; this would just be another medal to add to his wall of trophies and ribbons.

Before that day cardiac disease was not something our family thought about but we soon realized just how quickly a cardiac event could change a person’s and family’s future. Our family had been devastated 12 years earlier when our mom, Kale’s mom, was killed in a car accident. That death, while also sudden was

somehow easier to understand, as car accidents are accidents. In many cases cardiac disease is not an accident and if the right resources such as CPR and AED are available, some of these deaths can be avoided. In Kale’s case it was a mutation he had been carrying around since birth. Had he known what that mutation meant or even that it was there, perhaps Kale wouldn’t have been running that day, or maybe he would have been better prepared to monitor his heart and look for warning signs. Without this knowledge we were all unprepared for his death.

Kale was a very kind and loving man, he always brought a smile and energy to the room that was contagious. He had a sweet heart and even though he was the “popular guy”, if he saw someone feeling a little awkward in a social situation, he would gravitate to them and make them his best friend for the night. He just wanted everyone to smile and love life the way he did. Even to this day, many years after his death, his friends and family still recognize his birthday and celebrate a life well lived.

Beyond loving life, when Kale passed he was at an inflection point into adulthood, having finally finished school and working towards his designation as a certified financial planner. He had just moved to Toronto and was enjoying being in the big city with his big boy job, as his sisters liked to tease. The suddenness of Kale’s death hit everyone hard, but his legacy has been honored in many ways such as his former employer running yearly CPR and AED training for all their clients in lieu of Christmas gifts and his family’s work to increase awareness and education around cardiac disease and intervention. Although this will never bring Kale back, we hope it will help other families from having to experience the same tragic loss.

Matthew

Matthew has always loved sports.  He is very athletic and played many sports growing up, including soccer, baseball, volleyball, basketball and track & field.  His favourite sport is basketball and he played on his school team and on a competitive rep team in Mississauga. On October 18, 2015, 10 days before his 15th birthday, Matthew collapsed during basketball practice.  This was the first time he had ever fainted.  Everyone thought he must have tripped and hit his head, but no one was near him when he went down.  It did not occur to anyone in the gym that day, including his family, that it could have been his heart.  He came to as the paramedics arrived in the gym, with no memory of what had happened. One minute he was running a sprint drill, the next thing he knew, he woke up staring at the ceiling.  We got lucky that day.  We now know that approximately 30% of people with his condition die the first time they experience symptoms.

His initial tests in the ER at our local hospital seemed fine.  Thankfully, the pediatrician on call that day decided to send him for further testing “just to be safe”.  This likely saved his life.  Subsequent testing at Sick Kids revealed he has Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), a condition that causes heart arrhythmias.  As the heart rate increases in response to physical activity or emotional stress, it can trigger an abnormally fast and irregular heartbeat called ventricular tachycardia, thus putting him at risk of sudden cardiac arrest.

This was devastating news for Matthew, and for us. Initially, he was unable to participate in any of the sports and activities he loved so much.  It was a very emotional time for all of us, but especially for Matthew, as he had to come to terms not only with his diagnosis, but that fact that life as he knew it was over.  Sports were his life, how he defined himself.  He had to stop playing volleyball, basketball and track at high school and give up rep basketball and his dreams of playing basketball at university. We had to pull him out of overnight camp as that summer he was to be going on a week-long canoe trip through Algonquin Park. As parents, we had to figure out how to keep him safe wherever he was.  It took 18 months to find a medication combination that would provide him with adequate protection so he could start to resume some level of activity, although not at the level he was used to.  He is on a beta blocker and flecainide and has a personal AED that he takes with him as part of his “gym equipment”.  The combination of his medications, his AED, CPR-certified coaches and having at least one of his parents at every game, allowed him to play basketball and volleyball on his high school team in his final year of high school.  He also switched from running track to high jump so he could still be a member of the track & field team.  We will never forget the smile on his face when he finally stepped back on the basketball court.  He won MVP of all three teams that year, as well as athlete of the year.  One of his coaches, upon presenting the award, remarked that given everything Matthew had been through, he had persevered, and instead of saying “why me?”, had said “how can I do things differently”.

During the time he was unable to play sports, he chose to spend Saturdays coaching and teaching kids to play basketball, passing on his skills and his love for the game.

Matthew is currently in his second year of university, living away from home and enjoying everything university has to offer.  Although he takes his AED everywhere and he wears a Medic-Alert bracelet, we, and he, must evaluate everyday situations and excursions to determine if they are safe for him. This started with having to put a Health Protocol in place at his high school.  We were fortunate his public high school already had an AED on site, along with trained staff. When he went away to university last year, I had to call ahead and advise the residence staff of his condition and what to do in the event of an emergency.  It did not appear that there was a protocol in place for medical conditions like his prior to my call. He must always let those around him know he has an AED with him and to use it if he goes down.

Our experience has shown that most people are not aware that cardiac arrest can happen to anyone, young or old.  Publicly accessible AEDs are becoming more prevalent but are still absent from many places.  They are easy to use but we need to raise awareness about them and educate people on how to use them in order to save lives.

Nicholas

Nicholas was 6 when he became a sudden cardiac arrest survivor. At the time Nicholas’ family was unaware of an inherited heart condition and had no reason to suspect something like this before their life changing event. Nicholas enjoyed all aspects of a typical childhood trying all kinds of new experiences including sports without any further thought.

During a playdate at a friend’s house, Nicholas was startled and frightened by household cats and rapidly ran in fear up two flights of stairs. Parents of the household immediately followed Nicholas and found him with no pulse on the bedroom floor. The father performed CPR under the 911 operator’s instruction and the mother waved to the paramedics as they arrived. Immediate action from Nicholas’ friend’s parents, the luck of paramedics and their AED just minutes away, along with ER doctor diagnosis – is what saved Nicholas. Situations like these shouldn’t just count on luck.

Nicholas’ story demonstrates that the life-saving “Call-Push-Shock” approach does save lives. CPR and AED awareness is not well known and the outcome of survival from an out-of-hospital cardiac arrest is very low.

Today as an individual with a heart arrhythmia and at risk of sudden cardiac arrest, Nicholas balances the joys of life, being active with caution, surrounded by awareness and with an AED in close proximity. Anxiety and emotional stress from his childhood fear of cats and dogs was also overcome through a year-long process of integrating a family dog into his life. There are many activities he can participate in as he gets older and learns to self-advocate and regulate.

This is not only one family’s life changing experience but also a message to help equip our communities. Nicholas’ school designed their own emergency medical procedures calling it Code Pink; staff are AED and CPR trained and have procedures to follow upon paramedic arrival. Such procedures give confidence during sensitive minutes and are practiced as a routine school-wide drill.  Code Pink also strengthens the school’s own medical emergency protocols – which is a benefit for any emergency requiring medical attention. The school supported a child’s medical condition when no other playbook existed.

Often due to fear, we have been turned away. Inclusivity requires broader thinking and inherited heart conditions require more general awareness for testing to be common. We share our story to support the following key messages as each and every day is a blessing:

• Inclusivity and education on inherited heart conditions – Don’t be afraid, get the facts
• CPR and AED awareness is a life saving skill that should be taught to all including Youth