Tragedy Strikes Change

Karen Acompora’s Mission to Raise SCA Awareness & Save Lives

The Acompora family tragically lost their perfectly healthy 14 year-old son, Louis, to Sudden Cardiac Arrest (SCA) during his first high school lacrosse game. Although he had no health issues, a ball hit him in the chest which caused an electrical interruption to his heart cycle. Although it was a routine shot and Louis was wearing a prescribed chest protector, the sudden blunt impact to his chest caused an underreported phenomenon called commotio cordis, tragically ending his life. 

When Louis’ mother, Karen, learned that there were precautionary measures that could have been put in place that might have saved Louis’ life, it became her life’s mission to prevent future tragedies. Karen believes that raising public awareness and providing and maintaining AEDs in schools will save young lives. Along with her husband John, she has worked tirelessly to implement changes to better protect youth and the community from preventable SCA deaths.  

On May 7th, 2002, Bill# A8779 was signed into law in New York state. Louis’ Law mandates that all schools, K through 12, and charter schools have an AED on campus and the personnel trained to use the AED.

Transcript:

Karen Acompora: Unfortunately, tragedy strikes change and that’s when you see school districts get all over it.

Avive: Karen Acompora is no stranger to tragedy. She is also no stranger to affecting change. In March of 2000, she lost her son, Louis, to cardiac arrest during his first high school lacrosse game. She has since made it her mission to prevent this tragedy from happening to others by starting the Louis J. Acompora Memorial Foundation.

Karen Acompora: He was 14. He was on the ninth grade lacrosse team. He was the captain of the team. He was early in the second quarter of the game. He was wearing a prescribed chest protector that they wore at the time. He took a routine shot, meaning that the ball came towards him and rather than catching it with his stick, he stopped the ball with his chest. The ball dropped in front of Louis. He took a few steps and he collapsed. My husband and I were in the stands. My husband was actually the lacrosse coach for Lewis for his entire career up until he started playing high school ball. I said to John, “I think you should run onto the field because I think he had the wind knocked out of him.” And John said, “You know, Karen, I can’t do that. I’m not his coach anymore. He’s in high school.” So we just sat there. We assumed he tripped or he had the wind knocked out of him.

Avive: But it soon became apparent that Louis didn’t simply have the wind knocked out of him. It was something much more serious than that.

Karen Acompora: Very quickly we realized that things were not going well. We saw the coach run out and then he called for the trainer. All the players started taking a knee, which means that they stopped play. Honestly, we had no idea what was going on. My husband and I went down to the end of the field and we saw that they were starting CPR. And I’ll be honest, it was a surreal moment. I couldn’t even fathom that Louis would need CPR and they were cutting off his chest protector. I don’t know when 911 was called, but I do know, learning later on, that EMS did not arrive for 15 minutes. We were a quarter of a mile away from a major trauma hospital. They took Louis there and they worked on him for quite a while. And he just had absolutely no chance of survival.

Avive: Karen later learned that Louis did not have any health issues. And that the syndrome that sent him into cardiac arrest was actually caused by the ball hitting him in his chest.

Karen Acompora: So what I want to tell you is what actually happened to Louis. And it was something that we had never heard of. This was 20 years ago. This was in the year 2000. The ball hitting Louis in the chest interrupted his T wave in his heart cycle, which was an electrical interruption. It put his heart into ventricular fibrillation, which is a chaotic rhythm of the heart. And put him into Sudden Cardiac Arrest. That syndrome is called Commotio cordis. Louis had absolutely no underlying condition, underlying conditions don’t even cause Commotio cordis, it’s just an interruption of the electrical system of the heart.

Avive: 20 years ago, the importance of early defibrillation wasn’t a known fact like it is today. Unfortunately, the protocol for EMS personnel was much different then.

Karen Acompora: When EMS arrived, they didn’t have a defibrillator, they just scooped and ran. They didn’t defibrillate children on the field. They just didn’t. They brought him to the hospital. In our education, we’ve learned that with every minute that passes and defibrillation is not administered, your chances of survival drops by 10%. So we learned, unfortunately, that Louis had absolutely no chance at survival. We did not know that at the time, we thought that by the time he got to the hospital, they would be fixing him.

Avive: Karen says that she was completely in the dark about these heart conditions in student athletes and was blindsided by Louis’ passing, partly due to a lack of reporting in the media about Sudden Cardiac Arrest.

Karen Acompora: Sudden Cardiac Arrest was not in my vocabulary. Commotio cordis was certainly not in my vocabulary. Neither were Automatic External Defibrillators or AEDs. None of that was in my vocabulary, or that something like that could actually happen to anyone.

My son was playing a sport at a position that he absolutely loved, and that there was absolutely no equipment on the market at that time. Meaning, a chest protector, that would have prevented Commotio Cordis. 

I don’t want to say that it’s rare because if it happened to my son, I’m going to say to you, “That’s not rare.” So I can’t look at it like that, and nor should anyone else, because it could happen. We don’t know when, but it can happen. So we need to be prepared for events like that, regardless of whether it’s an underlying heart condition or something that can happen accidentally.

In lacrosse, in particular, after Louis passed away, it was like every spring there were incidents of commotio cordis and the farther we’ve gotten over the years it’s significantly less, due to equipment changes and balls were changed for lacrosse and baseball. But I do have to add that it’s not reported, it wasn’t in the newspapers. It was just not reported. Sports organizations don’t want to report something like that. And they just didn’t. So it was very underreported.

Avive: Once Karen learned that there were precautionary measures that could have been put in place that might have saved Louis’ life, that then became her mission statement.

Karen Acompora: AEDs started coming into the realm of the public in 1995. So this is only five years later and they were not on ambulances, and were they used on children? No, never. Back then, you didn’t defibrillate our youth, especially under the age of eight. And our police cars did not have them. They were just not out there in the public. So when we learned what an AED was and that it could be in this field, it was mind-blowing that people knew, and were not doing anything about it. And that people knew what commotio cordis was, and were not doing anything about it. And there was no sporting equipment out there to prevent it! How could there not be a chest protector out there that would prevent what happened?! So it was a process of education for us once learning what could be done, and that it should be there. That was the goal. And the mission.

Avive: Karen believes that AEDs should be in all schools and makes a great case as to why, no matter the financial cost.

Karen Acompora: Your school is a mini community, probably the largest business in your community, that houses the largest number of people. Number one, our children. Number two, the faculty and staff administration. There are a large number of people from our community in one particular place for eight hours a day, at least. And then there are events that go on outside of the normal class day, and visitors come to sporting events. Our kids are on the athletic field after school all throughout the year and that’s where the largest number of cardiac arrest cases are going to occur. I would say the barriers would be the financial end of it. Second, everybody’s overworked and inundated with all other things, they don’t want to take on something else. But I would tell them, listen, even if you save one life in five years, the cost that you put into it would be well worth it.

Avive: And I also tell schools, listen, you may not have had one in the last 10 years, but you will. It’s pretty much a given that something will happen to one of your staff, one of your visitors, one of your students, something will happen. You have to be prepared. We prepare for a million things. Every school has a fire extinguisher, correct? Let’s put that together. When was the last time you had a fire in the school? You have to look at it like that. Just because you haven’t had one doesn’t mean that you shouldn’t have something, just in case.

Karen Acompora: On May 7th, 2002, Bill# A8779 was signed into law in New York state. The bill is known as Louis’ Law.

Avive: Louis’ Law mandates that all schools, K through 12, and charter schools have an AED on campus and the personnel trained to use the AED. There’s not a requirement as to how many should be on campus, but in our program that was set up by New York state, there are suggestions on how many AEDs you should have. Unfortunately, our law is not a funding mandate, but this was 18 years ago. And our legislators were given more of, they used to call it a “slush fund”, where they could help their communities. Most of the legislators, because this was pretty unanimous, passing in the Senate. It passed unanimously. And in the assembly it was pretty much unanimous as well. So, all those legislators, our assemblymen, our senators, they all took bunches of money and put it throughout the community to help the school districts purchase AEDs.

Karen Acompora: Initially we had the state purchasing, that was less expensive than if a school district were to go out there. If we had had to fund that, we would not have had Louis’ Law. I think that for most states, that’s a big issue, the funding. I get it that that is the problem and schools are going to push back and say, “Well, you know, it’s all well and good, but who’s going to pay for it?”

Avive: Karen says that getting AEDs into public buildings is only half the battle. The other half is making sure that the AEDs are maintained.

Karen Acompora: In the very beginning we found AEDs that were locked in the nurse’s office because they were afraid it was going to get stolen. The kids were going to steal it. The athletic director has them, their pads and batteries are expired. The athletic directors leave them in the closet. I think it is a problem. But I think it’s not as much of a problem in the school districts, as it is in the community, the youth athletic organizations, churches, temples…I can’t tell you how many of those places I’ve gone to and found expired pads and batteries! So I would say it’s more in that arena, than in schools at this point, because you don’t have someone who’s in charge of it.

Karen Acompora: And if you do, you haven’t built a sustainable program. For example, John is in charge of the AED program in the youth athletic organization. Well, John’s kids have all graduated. Now he’s gone on, moved on, and the AEDs are sitting there and the league has not assigned a particular person to maintain the AEDs. Once the champion goes, then there goes the program. Before we donate an AED to anybody now, we make sure there is a maintenance program, that there is a specific person that will be in charge of it, whether it be a safety director, or whomever, but there’s a designated person that must be renewed every year. If it’s not going to be John, then next year it’s going to be Mike. But his entire list of what he needs to do is spelled out for him.

Avive: Karen believes that moving forward, the way to save even more lives is through public awareness.

Karen Acompora: These kids are now doing mass shooting drills. It’s all over the media. You know, if you had a fire in a school and one child or one person died in that fire, it would be all over the media. And I think that we just need to do a better job of saying to the public, listen, this is what we need to have in our schools to save lives. Just another piece of that emergency preparedness. Honestly, I think we need more messaging on TV, or video, or advertising. I think that that’s the way you get to the public– through internet sources or advertising. You can look at any product and it’s on TV. The quick little jingle. Look at the pharmaceutical companies, how they have all those messaging points out there. And I often say, I have never seen an ad for an AED on television. Never.

Karen Acompora: I don’t think that we have enough public service announcements concerning them. You know, the messaging through social media. I get a lot of that information because that’s my world. I think that for the general public, that messaging is not out there. It’s not, we don’t have the AEDs in the right places. We don’t. You have leagues that have them, where they need to be publicly accessible, but people have to have the awareness of where they are. People have to walk into a park or a school and say, “Oh, I know that’s where the AED is”, and they have to know to go get it. So we need to educate the public on Sudden Cardiac Arrest. And that’s what the problem is, we’re not getting that message out there.