Saving lives through education and advocacy work, placing AEDs in schools, increasing CPR/AED training in the public sector and supporting cardiac screening programs.
We had a fourteen year old teenager in a coma in the cardiac ward and we we looking for answers. From the moment we started talking to the doctors at Overlake Hospital in Bellevue, WA; it was one revelation after another. First, we learned the difference between a heart attack and a sudden cardiac arrest or in Sean's case, a ventricular fibrillation. Then the American Heart Association (AHA) called and our world changed.
The AHA introduced us to Alidene Doherty and we learned about AEDs, the PAD program (public access defibrillation). Then we learned about the other four children that had cardiac arrests in the Seattle area around the same time as Sean. That led to more info on kids and cardiac arrest and that young people were dying by the thousands across the country on an annual basis.
We also learned that the only way to save a life from an arrhythmia driven SCA was shock from a defibrillator. (Plus, the importance of the chain of survival) These conversations lead to more conversations and introductions to the AED manufactures, EMS organizations, Doctors and the other families who had a child that died in a school from a SCA. There was also a growing awareness on SCA issues across the country. With the news attention our family was getting, we decided we would educate the public on everything we had learned about SCA, AEDs and young people dying.
GETTING TO THE BOTTOM OF THE ISSUES
We were a family on a mission to get to the truth about SCA, AEDs and the schools decisions to not embrace this medical technology. Luc and I had meetings with the school district and ultimately, dozens of people. The more we learned, the more we were amazed at the resistance to adding AEDs to the schools basic safety programs. All this occurred in the first few months of Sean's cardiac arrest and while he was still in a coma. At this point in time, we still didn't know if Sean would live or die. Or if he lived, how disabled he would be due to the brain damage caused by the lack of oxygen during the SCA.
WHAT HAPPENED NEXT
This led to a huge public awareness campaign, dozens of news stories, battles with the school districts over placing donated AEDs, fund raisers, more meetings, etc. I don't have the exact number, but I believe there were over 60 schools that received AEDs from donations throughout several school districts around the Seattle area. Good Samaritan laws were changed at federal and state levels; other families in several states actually got their state laws changed so that AEDs were required in the schools. Some states didn't change their laws, but they appropriated money so that schools could buy and place AEDs.
There was a huge national campaign over AED placement in public places. The AHA was increasing CPR/AED training awareness and driving to get all the first responder vehicles equipped with AEDs (i.e. EMS, fire trucks, police vehicles, etc) The bottom line was that there was a simple to use, effective and safe device that could save lives if it was placed into the public domain. The goal was simple. Rapid response to SCAs by having AED readily available could save lives. Cardiac arrest is the number one killer of Americans and defibrillation is needed in 3 to 5 minutes to change that statistic. Public access to the device was the solution; that and making AED training as common as CPR.
AEDs SAVE LIVES and PUBLIC ACCESS WORKS
This simple to use, safe and inexpensive device was the link that can turn sudden cardiac arrest survival rates from less than 7% to as much as 75% percent. Everything to saving a life, when ventricular fibrillation is present, is about time. (Time to defibrillation) Every second counts and most people die waiting for EMS to arrive. Now you will find them in airports, movie theaters, government buildings, prisons, health clubs, shopping malls, with sports teams, on EMS vehicles, fire trucks, in police vehicles, etc. The bottom line is public access works; we just have to have more AEDs out there.
THE SCHOOL ISSUE: If there is one place that has been the most difficult to gain acceptance for AEDs, it's our public schools. Years ago, the federal government changed its laws and all federal facilities are required to have AED programs. Today, AEDs are common in the public domain and many people are CPR/AED trained.
Many people understand that AEDs in public places not only save lives, but they also figured out a safe and effective way to be responsible for their upkeep and management. The argument hasn't been about public access or the need and effectiveness of AEDs, it's been about whether schools should have them on-site. The "AED in schools" cause started over ten years ago with a handful of families across the country. All had a child die of sudden cardiac arrest while on school property. (Or in our case, a survivor who was left with major brain damage from the event)
WHAT IS HAPPENING NOW?
Ten years later, the State of Washington still hasn't changed the laws to require AEDs in schools. And, it's still an uphill battle placing donated AEDs in schools. It's getting better and some school districts are doing it, but many others are still resisting the change.
One thing that has helped the cause is that, both the federal and state "Good Samaritan" laws were changed to cover AEDs. In this lawsuit happy country, many people are afraid to provide emergency care to a fellow citizen because they are worried about getting sued. It's a sad commentary on our country, but it's a reality we live with. (The new laws help with that)
Another breakthrough was that WASBO (Washington Association of School Business Officials) did a risk assessment profile on AED programs for Washington schools that is helping the cause. Because of this risk assessment, many school districts are more open to receiving donated AEDs. You have to understand, everything in school decisions are driven by risk. This means they look at everything through the eyes of “will we be sued if we do, or support this”. Until I understood this, I couldn't define the cause we were really fighting. I thought we were trying to save lives and then I found out it was about law suits and how to minimize risk. (Boy, was I naive)
In our day, AEDs were placed in the Everett community and schools and the Lake Washington School Districts through fund raisers and community support. Since that time, the Nick of Time Foundation has raised money and placed AEDs in the Auburn and Federal Way Schools. The foundation has also been doing cardiac screenings in school districts around the Puget Sound area. They are launching a program with the Seahawks and other organizations to raise money and place AEDs in the Seattle Schools.
PUBLIC AWARENESS and PREVENTION
Prevention is an important step to help save lives. The awareness of the "signs and symptoms" in young people has increased for the public, coaches and doctors. Screening for heart defects in schools is also increasing across the country. Our son had a condition that was misdiagnosed when he was nine years old. If his ECG would have gone to a pediatric cardiac doctor instead of an adult doctor, we wouldn't have a full-care handicapped child in our home today.
There has been a huge educational growth in heart disease in young people across the country. It is better, but far from perfect. But, the underlying causes for a SCA aren’t always preceded by a symptom. When a SCA strikes, it happens fast and it kills quickly without fast intervention. This is why public awareness, CPR/AED training and public accessible AEDs are vital to the whole formula to saving lives.
WHY HAS THIS BEEN SO DIFFICULT?
In the state of Washington schools, some of it has been the risk management and insurance groups about lawsuit issues. There is also a an ongoing argument with the medical community as to the cost effectiveness of saving children's lives vs. the higher risk age groups, like adults. There still isn't a national registry established or required so nobody can get a true accurate figure of the number of young people who die from SCA each year. The AHA avoids the issue of putting AEDs in schools because their main focus is getting them in first responder vehicles. That carries over to the focus of public access effectiveness vs. first responder programs.
Some of the battle has been basic ignorance and lack of education as to the difference between a heart attack or sudden cardiac arrest and what an defibrillator is used for. A lot of it has been key people unwillingness to look at the facts and get educated. There has been some good and poor reporting the issue in the news that produces mixed messages in the public eye.
The list goes on and I will address every one of these issues in Sean's blog site. Whatever the argument or issue, the bottom line is AEDs work and SCA is the number one killer in America.
- Survival rate in the public is less than 7% and public access is saving lives
- Young people are dying in our schools and there is an increase in SCA in young people
- Even though it is important to get AEDs into first responder vehicles, EMS has a response time to the scene of 8 to 12 minutes, and that's not good enough
- Public access is one of the key components. SCA has a 3 to 5 minute window to get defibrillator shock to save a life or reduce the brain damage that occurs during the event.
- It's not just about the children and teenagers. Schools are also full of the highest risk age group for SCA; teachers, coaches, parents, after school adult sports. Many rent their facilities to arts groups, churches, etc. (These are population density environments)
- Most schools are a part of the community emergency response system in cause of a natural disaster or terrorist attack and they need to be prepared with the proper equipment.
WASHINGTON STATE
There are 290 school districts in the State of Washington and 300 private schools. Awareness and acceptance has improved through the years and more and more people and organizations are joining the cause. But it is far from over. There is still a resistance and ignorance to placing AEDs in schools and this cause needs help. I am currently compiling a list of schools that have AED's across the state. We will use Sean's Blog to pinpoint the blockage points and educate people on the whole issue concerning SCA & AEDs in our schools.
SOLUTIONS THAT WORK
- Heart screening to head off defects that can lead to SCA
- Community driven fund raisers to purchase and donate AEDs and training to both schools, high traffic public environments and first responder vehicles
- Public access programs to get AEDs in key population centers
- Advocacy with the legislation and get our laws changed
PARTIAL LIST OF WASHINGTON SCHOOLS THAT HAVE AEDs
- Lake Washington School District
- Everett Schools
- Auburn
- Federal Way
- There are more and this will be updated as the information comes in. (Please help)
SURVIVORS, DEATHS AND COMMON SENSE
There are stories of teenager's lives being saved in the schools that have implemented AED programs. But, there are also stories of children dying in schools where AEDs are not present. And, there are stories of AEDs in schools that are locked up and inaccessible for public access. (Failed programs) I realized years ago that we couldn't raise money and place AEDs fast enough to save every life. The fastest way to make this happen is to change the laws so that AEDs are a required device in our schools. The laws change and schools get it done; it's as simple as that.
Budgetary issues are an argument I have heard during our advocacy work. That argument doesn't work on me; I can point out amazing amounts of wasted money concerning our school districts and will do so in a blog article. Plus, in our experience most communities will rise up and help in an instant to donate money to schools for this program. It's never been the people in the community or the teachers or coaches who have resisted the placing AEDs in schools. (That's another blog story)
We know that it’s not just about the children; the aging teacher population, parents and adult after school sports teams are the highest risk age group for SCA. On top of that, many schools are a part of the community emergency response system in case of natural disasters or terrorist attacks. What about you, as an adult? Most likely, you're safer in the public or even in a shopping mall if you have a SCA than you are in a public school. Sean's EMS station was 1.5 miles from the school and it still took eight minutes from the point of his collapse to his first shock. Remember, seconds matter in a SCA. Every public or government facility, including our state capital seems to have an AED, but not the schools. I didn't understand this fact ten years ago and I still don't understand it today. (That's the question of the hour)
THE NUMBER ONE HEATH KILLER IN OUR SOCIETY
We were out of the fight for a few years while establishing a home environment for a full-care disabled child (now an adult) and recovering from all impact this type of event has on a family. There has been a series of events that have pulled us back into the cause. (They will be written about in Sean's blog) We're back and it's time to put this issue to bed and get the laws changed to provide the safest school environment and public access medical technology can offer.
If AEDs are required in government offices and in prisons, then it would seem that they should be required in schools where our greatest future resource is. (Our children) This issue is not dealing with some rare disease. Sudden Cardiac Arrest is the number one, drop dead killer of Americans. I read different statics, but according to the AHA, it almost 300,000 people die of SCA outside of medical environments.
SCA has a huge impact on our health care and emergency response systems. Just ask your local EMS how they feel about showing up time and time again, minutes late to save a life from cardiac arrest. They get it and this family gets it; every day for the last ten years we look at a son who survived a SCA, but was left with massive brain damage. And, he is a 24/7 full-care patient in our home because of the SCA and the delay in time to defibrillation.
Sean's friends used to call him "Iron Man" because he was unstoppable on the football field and wrestling mat. He was bright, popular and super star athletic with his whole life ahead of him. Seconds matter and public accessible AEDs are saving lives and helping stop the terrible neurological damage in SCA survivors. You have five minutes before the brain dies from lack of oxygen. When a victim finally collapses from a cardiac arrest, their brain is already low on oxygen. Low oxygen content is even is a bigger factor when the victim is participating in an athletic event and exerting themselves. Now you have 2 or 3 minutes to convert the ventricular fibrillation to a normal rhythm with an AED or brain damage occurs. CPR barely helps in a ventricular fibrillation and waiting 8 to 12 minutes for EMS to arrive with an AED just isn't good enough.
See Sean's "Mission of the Heart" on:
- www.seanshipler.org
