World Restart a Heart Day: How Simon's Heart is saving lives

Alright everybody, welcome back in to Philadelphia Live. I'm Jade Murray and a very important story that I want to bring to your attention. It all has to do with World Restart Heart Day. That's today. And really today, but of course any day, we want to make sure that we are showing people different things that they should be aware of. That could be health implications or just awareness months that I think would be very beneficial to you all. So while we just re-transition a couple of different things that are happening in studio, we want to get into this interview as well. So the first person that we're going to be talking to is Darren Studman. Understand that he is the co-founder of Simon's Heart. And he is also a little boy named Simon's father. So first of all, take a look at how adorable they are. That's Simon right there. Again, his dad, Darren, has made some time with us to talk a little bit more about what World Restart a Heart Day is all about, and to share Simon's story and the organization that he's been running for years now, how that's able to help people. So I want to welcome him on in. Darren, say hello to the people. Welcome on in to Philadelphia Live. Hi, how are you? Thanks for having me tonight. I'm doing pretty good, and I'm very excited to see you. I saw that you have been on Fox 29 before. Was it 2019 the last time our folks here saw you? A few times, yeah. Wow. Okay. I'm not sure the date. Yeah. Alex, Holly, I know, and Mike Jarek have at least done an interview with you, so it's my honor to also get to speak with you as well. And I want to just start with World Restart a Heart Day. For anyone who has never heard of it, can you just explain to us a little bit more about what it's all about? Definitely. Let me first just say, though, as an organization that focuses on the health and safety of kids, that last segment was really tough, so my thoughts are with the kids and the families in bed. So World Restart a Heart Day was started by an organization in Europe as a way to bring awareness to the idea that you, me, all of us can help restart a heart, help save someone who's in cardiac arrest with our hands by doing CPR or just by grabbing an AED device off the wall. And we told people that we would be talking to them about those AED devices in just a little while. We've got them here in our station. And you may see them out in public and maybe not even know what it is or how to use it. So we'll get into that in just a second. But your son, as we showed everybody, a few photos of him, of the family, we had heard passed away in 2004. And this was something that you have spoken about, was just undetected, but treatable if it would have been caught. So, first of all, how old was he at the time? And then what do you mean when you say undetected, but treatable? Yes, so Simon passed away in 2005. I'm so sorry. Obviously a long, oh, it's fine. He was three months old. He was taking a nap and he didn't wake up. And the initial prognosis was SIDS. But fortunately, our pediatricians were curious. And they told us to go get our hearts checked because babies just don't die. And it turned out that my wife was diagnosed with a heart condition called long QT syndrome, which is an arrhythmia. It's one of a handful of conditions that cause sudden cardiac arrest and death in students as well as the general population. But also we found out that long QT has been linked to 10% of SIDS deaths. So long QT is pretty easy to detect. And if perhaps my wife had been screened earlier and found that, then Simon might have found his condition and be here with us today. From there, I'm just wondering, as you process both of those things, and knowing that it has been years where maybe we've gotten to see the, I don't know, organizations, council members, are trying to do a little bit more, doctors do a little bit more in research, I'm just wondering some of the biggest things that would have changed from the last time you were here on FOX 29, and which we might be seeing today in 2026. Anything of note to you? Definitely. I mean, AEDs are more readily available now. I think many more people are available about things like CPR because of things that, like Simon's Heart does, our organization around the CPR jukebox marathon that's coming up. But I'd say the biggest advancement is now there's at least one state that requires student athletes to get their hearts screened before they can play sports in their schools. And that's huge because back when Simon died there wasn't really any awareness around heart screenings for kids and uh and that's why the advice we got from our pediatrician was so unique and so then that makes me wonder too because there are going to be other parents who watch this who've gotten to listen into your story and either have found themselves in your same shoes or unfortunately will one day and they're not going to know what to do with themselves or how to you know process those different emotions So do you have any advice to a parent who might find themselves in this situation? One, that can just help them make sense of it. And then I have a second question for you that's also with that. Yeah, I would like to address that two ways, actually. So I would ask all parents to just recognize that fainting during or right after exercise is not normal. It could suggest there's an underlying heart condition. So get that checked out. And if your question was also about how do you deal with loss like this, surround yourself with people who are going to support you and try to pour your energy into helping other people. The day we lost Simon was probably the worst day of my life, but many of the days after, I've encountered some incredible people and been presented with some incredible opportunities that I would have never had but for this tragedy. So, there's pain and joy that comes out of something like this. You mentioned there one of the things that would be helpful would be to figure out how you can, you know, help other people as well. And then I think that's where Simon's Heart comes into play. So, these days, what are you able to do? What's the mission and then how can we help? Oh, thank you. So, Simon's Heart has been around for 20 years and we provide free heart screenings for students. We have a digital registry that gathers data So it helps to promote research because there's not a lot of of research done in the pediatric cardiology space. We actually distribute AED devices through our crowdfunding website, Got AED. And then we have a CPR jukebox, which is a fun and engaging way for students to learn how to do compressions where they just grab a ball, pick their favorite song and start pushing to the beat. I've heard people say with CPR, the song of choice is Stayin' Alive. Is that your song of choice, too, to stay on beat? Probably not, and I find that most people who are younger don't really know that song, unless they saw Alvin and the Chipmunks 2. Yeah, it's an old-school song, but there's plenty of songs with artists that they know and love that have those songs that are in the CPR sweet spot. Okay, we'll have to look for different songs. Maybe I'm showing my age by saying that one out loud. Yeah, check out our CPR jukebox. It's a playlist on Spotify and iHeart. Okay, well, first of all, I love Spotify, so I will be doing that. All right. Um, and with that, just real quick, how does CPR help with what we're talking about here in the AEDs with sudden cardiac arrest, just knowing CPR, what can that do as well? Yeah. And I would, I would actually say you don't even really need to know CPR. You just need to be comfortable to jump in and, um, and push on someone's chest firmly and, and to a beat that's a hundred to 120 beats per minute, because all we're really doing is, is the heart has stopped performing the way it needs to. It's not pushing blood around the body. So when we're pushing on the chest, we're circulating the blood. And then when we grab the AED, we're actually shocking the heart into its normal rhythm. And AEDs are smart devices. So they do the evaluation. They'll determine whether a shock is needed. So really all we need are people who are one, brave enough to push the on button to the AED and listen to the prompts. And then two, call 911 and follow their instructions about pushing on a chest to the beat of their favorite song. Wow, so it's really that easy. It seems the hardest thing is to have the confidence and the courage to do it. That's totally it. To just know that you're not going to hurt that person because he or she will not make it if there's not intervention. Okay. Now, for our audience who's listening in, you have been listening in so far to just Darren Sudman. I want to keep the conversation of Simon's Heart going because, again, this is an organization, as he mentioned, that's been around for 20 years. they've been doing a lot of hard work and also sharing more about how you guys can get involved too so the next person that we're going to talk to to keep this conversation going is Annie Kelly and she actually is a survivor of sudden cardiac arrest so while we were talking to uh simon or excuse me um to Darren about Simon Hassan I also want to share some with you guys someone who has experienced this firsthand as well. From being a survivor, she's also an advocate for CPR and AED awareness, and we've been keeping that conversation going as well. Annie, I know you are in our live stream chat as well. I want you to jump in and chime in here. You just heard Darren and Simon's story. It is not something that is new to you because you are a part of Simon's heart as well, and I understand that you have also survived this. I heard that it happened at a Wawa. Please correct me if I'm wrong somewhere here in Pennsylvania when you would have been young okay so first of all welcome on in thank you for joining our conversation as well do you want to share anything about that day yeah absolutely so um it was in 2016 I was 19 years old um I was with my mom and I uh was being an annoying teenager begging her to go get a hoagie And luckily, she took me there because of the events that will unfold. But I ended up getting out of the car before I could even make it into the into the Wawa. I ended up going into sudden cardiac arrest. Luckily, there were two police officers that were nearby that had an AED in their patrol car. One started CPR on me first. And then when it was determined that an AED was needed, that was placed on my chest, a shock was advised, one shock was delivered, and I came back from being flatlined. It turned out that I actually have the same condition that Simon had, long QT syndrome, and I never knew. I was very symptomatic, but that's another reason why it's very important to get your heart checked, because that didn't really happen the way it should have. And had I had a simple EKG, we would have had an easy diagnosis. I would have went on medication and gotten the pacemaker and defibrillator that I now have earlier in the process and saved myself and my mom a lot of trauma. I mean, I have so many questions for you. I hope that you allow me to pick your brain here. Absolutely. Yeah. So knowing that Simon was just a baby and you were extremely young as well when this happened to you. I mean, realistically, that kind of testing, that kind of screening, is it something that folks your age would have done, something that doctors would have looked for? How would you have known that you had long QT syndrome? Well, the first thing was that I had obvious warning signs. I was having seizures. I was passing out. I was fainting. And that should have been the first sign to get your heart checked. So I was actually misdiagnosed with epilepsy. So it was it was a whole whirlwind but we we ended up getting to the bottom of it and i ended up getting the the the help that i needed but um the first sign were those warning signs so like darren mentioned earlier uh fainting after running or any kind of fainting in general is not normal and is definitely a reason to get your heart checked first of all thank you for sharing that with us and it also helps me understand something about myself i don't want to get too deep into it a couple of years ago i had fainted on the job and the first thing that they did was that test that you had mentioned the the ekg yeah and i wasn't quite sure why they had but now i'm understanding you had mentioned fainting could have been one of those symptoms so maybe i should be very happy that uh they at least thought to look in that direction and maybe that shows us with how far along medicine is coming oh absolutely okay now from there when i was talking to darren I understand that his way of, you know, raising awareness, making sure more people know about this was by starting Simon's Heart all those years ago. For you, how are you trying to make sure that you have an impact as well and make sure that people understand what even this syndrome is all about? Yeah. So I was in the hospital. My cardiologist is the one that made the introduction to Darren and his wife, Phyllis, just three days after my sudden cardiac arrest. So I got involved with simon's heart immediately darren said it's really important to surround yourself around people um that could support you so that's exactly what my family and i did we got involved with simon's heart immediately we started volunteering i started sharing my story um i know people directly whose lives were positively impacted they went to go get a heart screening or they went to a heart screening or they got their heart checked after hearing my story because they recognize some symptoms that they were having and so that was kind of the start of it right so I was sharing my story I was seeing immediate impact I was seeing how many people I can reach by sharing such an impactful story I mean how many people do you know literally died at 19 years old and was able to come back from that um from there I have been to Harrisburg and lobbied with Simon's Heart to um to improve legislation with AEDs um i've encouraged townships to place AEDs in their playing fields which has been successful same with college campuses um and the reward is that uh even if it just saves one person that's one person that doesn't have to go through what my mom went through that day where she literally watched my her son her daughter die or where Darren unfortunately went through the passing of Simon so um whenever anybody has any pushback about an AED oh why should I put this in my playing field it costs too much money I ask them well do you have a daughter do you have a son and would you put a dollar value on their life because I bet the answer is no and so you better put that AED in that in that playing field and I bet you it works like a charm every time because there is no reason why you wouldn't especially when you put it in that way yeah so annie how can we help you guys out with all the efforts that you have going on with Simon's Heart clearly it's been a success because you've been able to do it for so long but still how do we help you guys keep going yeah absolutely um we actually do have an event coming up uh darren we all pass this over to darren and and he can share a little bit more information about that yeah darren weigh in yeah great um we have a brand new event coming up it's It's an all-night-long, 12-hour CPR jukebox marathon that's designed specifically for high school students. They'll join us at the venue, engage in a whole lot of fun activities. But it's all centered around the idea that as a group, they're going to have balls. And they're going to keep compressions going on that ball all night long for 12 hours to just a variety of music for that entire time. It's a fundraiser. It's fun. and it's meant to just raise awareness and make sure that people know that saving a life is serious but learning how to do it can be fun. I love this so much and I'm happy that I was able to share even just smidgens of your stories with people but there's so much more that we didn't even get to tap into. So can you tell everybody where you want them to keep their eyes on Simon's Heart and whether or not you want to share your other social media channels just so people can stay up to date? Yeah, thank you. It's simonsheart.org. And then I just want to use my last couple of seconds to finish Annie's story. She has gone on to get married and she is now expecting her first child. So to see that happen because of CPR and AEDs, Annie talked about just saving one person. And that day, that year, Annie was that one person. And look at what's happening now. Thank you, Darren. That warms up my heart. Wow, you guys. Congratulations. Bringing a baby to this world is a beautiful thing. i'm so happy for you thank you and it wouldn't have been possible unless that AED was available so i owe everything to um the where the two cops were in the first place too so there was a lot of things that led up to that point that put them there and put me there in that in that situation so um everything was perfect that day for for my life to be saved and i owe everything to them and and the AED and their quick action also is another important thing with all of this you can you can have all the knowledge about CPR and AEDs, but you need to be ready to jump into action and be prepared to help. Shoutout again, as I mentioned, the courage and the confidence seems to be the hardest part. So for them, as you mentioned, being able to do that, being willing to do that, saving your life, and now you're able to create more life. This is just beautiful. And I thank both of you for making some time for us here on Philadelphia Life and braving through for some of the technical difficulties with me as well. Thanks for having us. Thank you.