SEAN IS BACK AND WE STILL HAVE WORK TO DO
We’ve been out of the public eye for a couple of years. There has been a series of events in our lives that has prompted us to reengage in the cause to educate the public on sudden cardiac arrest (SCA) in young people and the need for Automatic External Defibrillators (AEDs) in schools. This is an update as to what happened to Sean, our involvement and where we are now in the fight to save young people's lives.
WHERE IT ALL STARTED
On November 2nd, 2000 our fourteen year-old son Sean, was running the track in PE at school and he suffered a sudden cardiac arrest. (SCA - or in technical terms, a ventricular fibrillation) It took ten minutes and eighteen seconds for the E.M.T.'s to stabilize his heart and save his life. Sean survived, but the lack of oxygen caused massive brain injury and left him in a coma. We were a family who wanted answers and when we got them a cause was defined to make some changes in our public schools. See: Sean's Story
THE CAUSE WAS DEFINED
During the first week of Sean lying in a coma at Overlake Hospital, I was sitting in the hallway outside of the cardiac ward and I heard a distinct voice telling me, “You do what I put in front of you and I’ll take care of your son.” It was clearly a call to faith; because I had no idea what it was we were supposed to do. That changed the next day when the hospital social worker told us that we going to face news reporters about the incident. It seems Sean’s event was a hot news item. I figured that was what was “put in front of me” so I decided to do some advocacy on SCA in young people, Boy was I in for a surprise because that was just the tip of the iceberg in terms of what we were going to end up doing.
Around that time, the American Heart Association called us and that led to Alidene Doherty, who was part the Public Access Defibrillation (PAD) trial research program. She was a wealth of information on everything to do with Sudden Cardiac Arrest and Automated External Defibrillators. From her we learned about the history of AEDs, the issues of young people dying from SCAs in schools, who all the players were and what the resistance was to placing AEDs in schools. Basically, she changed our world and really defined what our cause was to become.
I think the one thing that really upset us was that AEDs had been around for a few years and the school districts had looked at them and discarded the idea of placing them in the schools. You have to remember that this all happened at a time when four other teenagers suffer cardiac arrests in the Puget Sound right around the same time as Sean. Needless to say, we became a family on a mission to find out why the schools were resisting this simple to use, safe device. The cause was defined and we went to work. SEE AEDs in Schools
Luc, my oldest son, and I had dozens of meetings that included the EMS/Fire departments, Doctors, the school districts, OSPI, AED manufactures, the AHA, the police, other families who had children die of SCA in schools, etc, etc. I believe we ended up doing almost twenty news stories. This turned into a huge grass roots drive to educate the public on SCA in young people and a battle to get AEDs into the school emergency response programs. Ultimately there were fund raisers in several different environments and AEDs were placed in approximately fifty schools in the Puget Sound area. But the battle was far from over. More on the subject on Sean’s web site: The Cause
WE TOOK A BREAK
You have to realize we were doing all of this while Sean was in a fight for his life and gradually stabilizing to the condition he is in today. We basically lived in the hospital and then a long-term care facility in Olympia, WA until we finally brought him home to live. This was a three year whirlwind of events that is mind boggling to look back on. If I knew what I know now, I don’t know if we would have done what we did. That’s the thing about an act of faith, it is full of unknowns and it pulls you along. Thinking about it is usually what you do afterward.
There were several events that led us to decide to pull out of the AED advocacy battle. Some of it was bringing Sean home to live, which was basically turning our home into a 24/7 full-care handicap environment. Some of it was because we decided we didn’t like the way “our cause” was being changed by certain people who had come on board to help.
Below is a list of factors we determined were vital to launching a PAD program for the first school district to have a AEDs in Washington state. It was vital to create a proper and complete program that could then be duplicated from district to district across the state. I was consulting with Jack Robinson of the Everett EMS who was heading up a public access program for both their schools and the public environment. There was huge opposition to AEDs in schools and this needed to be done right. Some of the people involved decided they were going to raise money and shove AEDs into the schools thinking that all these items either didn’t matter or would fix themselves. We knew different. One failed AED program, one death because an AED wasn’t in a good location or one laws suit would set us back years of work and acceptance.
Basically, we decided to pull our families support. It is difficult to write about this because we had put in a lot of work to get to where we understood what the real issues were and what steps needed to be taken to solve this issue correctly. Eight years later, talking to people that had implemented AED programs in schools, has unfortunately proven that it is even more vital to do it right the first time, than to “just do it” and hope it works. Luckily, public access is becoming common enough that the program is still moving forward, but it set it back in this state several years.
THE FACTORS WE DETERMINED THAT WERE VITAL TO A SUCCESSFUL RESULT:
- Keep the cause pure: Do not let any company, organization or person pull the focus off the core drive of the cause. In this case it was young people dying of SCA in schools and the need to change that scenario by educating the public, placing AEDS and ultimately changing the laws.
- The right people: This is vital. We surrounded ourselves with experts in many fields and got them to support the cause. It’s also important who you allow to come on board to help you. We learned some tough lessons about politics and personal agendas through our work.
- Public support: The key is to educate the public through multiple venues. (i.e. the news, person to person, public events, internet, etc) One thing we learned was that the news was willing to do stories on us as a family, but when it came time to get tough on the schools, they backed off. If we would have had the tools we have today like blogs, Facebook, etc; we could have got the story out there more effectively. Even today many news stories are vague and many times they get the information wrong; like calling a SCA a heart attack.
- Identify the blockage: We never had an issue with a parent, teacher, coach, school nurse, EMS personnel, etc. The challenge was at the district level. We learned that risk managers and the insurance companies we blocking the forward movement of getting AEDs placed in schools. The battle wasn’t the schools; it was a handful of people at the top of the bureaucratic pile.
- Design a proper AED program: One AED per school is typically not enough. This was a huge issue with the insurance and school district risk managers. They were warning school districts that if they accepted an AED and it was too far away from a SCA event and someone died, they could be sued. Location of the AED is also important; having an AED locked in a nurse’s office isn’t going to save a life. The program needs to be thoroughly planned. Things like the time-line from the AED to all points on the school grounds determines how many units need to be placed and where. Factors like deciding if you want AEDs to travel with the sports teams are also important to the overall plan. In Lake Washington schools, we had a police officer on school grounds that could have a unit in the vehicle. Proximity to the EMS/Fire station is a factor, but the facts are pretty clear that from the time of a SCA event to the first shock coming in from an outside source, it is a pretty low chance of survival.
- Make the program in line with a total community PAD program: This is important if you want the American Heart Association on board. At that time, the AHA was actually against the family grass roots movements putting all the public focus on the schools. In Washington State, their main objective was making sure all the first responder vehicles had AEDs in them. And, then it was placing AEDs in "high-risk” public areas. There is still an active debate over whether schools fit into the high-risk category. There was a divide between the AHA and several grass roots movement over this issue. We believe both situations can and should be done together.
- The right message: To us, it was about the children, but in the larger picture of high risk SCA groups, it was the older generation. The good thing is that by placing AEDs in schools, both groups are covered. Schools are not just about children and teenagers. There are the teachers, parents and visitors who represent the highest risk category for SCA. Plus, many schools rent their facilities for public events and have after school adult’s sports on-site. Many are also part of the community disaster response program.
- Funding sources: This was vital; purchasing AEDs, training and maintenance is big money and we knew we needed strong public support to get it done. The good news is we had the information and a cause that attracted huge public support. The battle wasn’t getting the public to support our cause, it was getting the schools to accept and be responsible for the AEDs.
- The medical community: This is a another big issue: There are doctors who believe the issues of young people dying of cardiac arrest warrant heart screening and resources applied to the issue. And then there are doctors who don’t think the numbers of young people at risk are enough to warrant all the attention and resources this issue is getting. And these doctors influence decision makers in the community. More and more data is coming out to suggest the problem is as big as we believed it to be. There are politics in everything and we learned you can’t get intimated by the naysayers.
- EMS/Fire: There is a lot of support from these people. Most emergency responders that we have talked to get the issue of time and cardiac arrest. With a 7% save rate in the public compared to a 75%+ save rate where defibrillation is accessible, it is a pretty overwhelming vote for AEDs in schools. Most first responders are pro-public access programs and support it. Their main concern is that the program is done correctly. (i.e. program oversight, maintenance, training, etc) I also believe that if you are going to do a school program that it should include funding to upgrade or outfit the EMS/Fire vehicles in the community.
- Duplicatable program: Whatever we did first had to be done right and it had to be able to be duplicated over and over again in the rest of the schools districts. The first one or two programs would become the model. Raising money, placing AEDs and training was the easy part. The rest of the hidden issues need to be dealt with for this to be successful.
I have reconnected with many key people and got updated on how the cause has been progressing. My goal is to add value to the people who are getting things done and work on a few programs in our community. The good news is that there are increasing stories of people being saved from SCA events in schools (both young and old). The bad news is there are still young people dying in schools that don’t have AEDs. There is also an increased support for cardiac screening across the country in the school systems. Saving young people’s lives has always been a multi-pronged solution.
Awareness and prevention are as vital as AED placement. Our son, Sean, had a misdiagnosed heart condition that almost killed him and left him very handicapped due to the anoxia brain damage he received during the cardiac arrest. We learned that if the ECG he got at nine years old would have been seen by a child cardiac specialist, we would have know he was at risk of a SCA. He also had fainting issues at the school and nobody told us about them. This information in today’s world is a sure sign of potential heart issues.
Education and awareness is vital, we got that message very clearly back ten years ago. But we also know that when a SCA strikes the AED can save a life and done quick enough, can help prevent brain damage from lack of oxygen. Sean was saved by an AED, but because of the time involved, he suffered major brain damage.
So, we’re back and there is still a lot to do. We will use Sean’s Web Site, his Facebook account and this Blog as a platform to educate and update on the cause, what’s being done and what still needs to be done. Please pass this information on and join Sean’s "Mission of the Heart" on Facebook.
MORE ON AEDs, SCA and PUBLIC ACCESS
A SCA that occur in the public without access to AEDs is less than a 7% survival rate. When you wait the typical 8 to 12 minutes for EMS to arrive, the victim is usually dies. The AHA "Chain if survival" calls for defibrillation in 3 to 5 minutes. That time-line requires a public accessible AED. Sudden cardiac arrest claims almost 300,000 victims a year in this country. Survival rates vary from 7% to 75% depending on how accessible defibrillation is for the victim. (And, the Chain of Survival)
TYPICAL PUBLIC ACCESS LOCATIONS
- Businesses
- Hospitals and Medical Facilities
- Government Buildings
- Doctor and Dentist Offices
- Prisons (Note: it’s a state law for prisons to have AEDs, but not the schools)
- Shopping Malls
- Sports Stadiums
- Swimming Pools
- Carried with the Sports Teams
- On EMS Vehicles & Fire Trucks
- In Police Vehicles
- Schools and Universities (Not enough)
- Manufacturing Facilities
- Restaurants, Hotels and Casinos
- Etc
See Sean's "Mission of the Heart" on:
- Facebook
