Sports Clearance for Kids with Heart Issues (Part 2)

Podcast Transcript

Speaker 4: Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time.

In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now, here's today's host.

Dr. Mayme Marshall: Welcome back to part two of our conversation. Please be sure to listen to part one of this episode.

Now let's get back to Little Health. I'm your host, Dr. Mayme Marshall, a pediatric cardiologist at Cleveland Clinic Children's, and the Director of Patient Family Experience for the division of Cardiology and Cardiovascular Medicine.

We know the incredible benefits playing sports offers kids, but if your child has a heart condition, their safety when participating is naturally a big concern.

Today, as part of our season on pediatric cardiology, we're talking about sports clearance, what it means, what you need to know, and how to help your children pursue sports while making their health the top priority.

Our special guests today are TJ Carrie, a former NFL Player and founder of the TJ Carrie Foundation.

TJ Carrie: Hi. Thanks for having me. I'm excited to be here.

Dr. Mayme Marshall: We're so happy you're here. We also have Dr. Pete Aziz.

Dr. Pete Aziz: Hey everybody.

Dr. Mayme Marshall: My colleague, pediatric cardiologist who specializes in heart rhythm disorders at Cleveland Clinic Children's, Dr. Aziz.

Dr. Pete Aziz: You know, a lot of families want to hear a physician say, you know, what is the bottom line, right? What is the parting message from a podcast like this? What can I take away from it? Hopefully there are some nuggets here that will provide that.

Having said that, I think making general comments about congenital heart disease, when there is so much heterogeneity. It's such a spectrum of minor, what we think are minor diseases to things that are more complex and have different risks associated with them.

We, we try to avoid saying for X, Y, Z disease, this is the prescription and this is what you should do or not do. [Mm-hmm.] Lean more on, let's have a conversation about it and talk about what the risks are.

You know, there are, there are definitely certain conditions where weightlifting is probably not the best idea. Where weightlifting, other conditions is probably one of the few things that a patient can do.

So it really depends on the condition and working with the families and the, and the patient really to figure that out, I think is the most important take away as it pertains to what are the restrictions and how do we manage it? That really is the answer.

Dr. Mayme Marshall: So to both of you, what are the resources, support groups, what's out there to help patients learn more?

Dr. Pete Aziz: I'll start 'cause I think I. TJ probably has a couple of, uh, suggestions in this regard. But speaking as a medical provider, we spend a lot of our time sort of directing patients and families to resources that we know as a provider I'm not gonna be able to, to give them necessarily in a way that is tangible and palatable.

So, for example, there are many programs out there like Project Adam, for example. Works on getting AEDs to schools, uh, and out in the community. There's a foundation called the SADS Foundation that is a family support group, identifies patients that have heart rhythm disorders and really provides them a community for education, for research opportunities, things like that.

Um, there are many programs that provide ECG screening. So some of them are fee for service if you want your child to get screened. I won't mention any of them because they're fee for service and I feel like that's not fair to mention one and not the other, but that certainly exists out there.

The Cleveland Clinic website, of course, has resources as well regarding specific conditions, what to do about them, what signs and symptoms are concerning. When to consult your provider, what provider you can consult. I think a lot of that information is there for them.

And TJ's gonna tell us a little bit more, I think.

TJ Carrie: Yeah. Yeah. One of the amazing services of, of really how we built the TJ Carrie Foundation is to really cater to our families what congenital heart disease and a few of the programs that we offer now are services that we'd love to support families in the area in any capacity.

One of the biggest uh, programs that we've continuously implemented was Camp Carrie and it's a family retreat. It goes over a lot of what we discussed in terms of understanding programming from a sibling perspective, mom and dad perspective, and then a heart warrior perspective and really.

Kind of building that community of other families who you can lean on in times of need, in times of uncertainty. Heart disease is, it's, it's so it's own lane in some capacity to where you think you're the only one that has the situation, but you're not.

And so to be able to be put into groups where, you know, you have families that there's 10 families that are going through similar cases in different stages, right? Either pre-stage of where you're at or post stage of where you're at. It's a phenomenal opportunity for you to lean on them and call them and you know, where are you? Or what did you do? Or how did this help in so many ways?

So, um, we still have, I think, one or two spots in this year's Camp Carrie. It's, uh, [awesome] it'll be in, in Maumi Bay. It's an all-inclusive camp. It's free service for our families. You just sign up and, and come out and have some fun and meet other families that will be able to support you.

Um, and then the uh, one of the biggest things that I felt would, would save my life in the, in this timeframe was the ECG-EKG screenings. [Mm-hmm.] And, um, being able to offer that service for free for our families. Uh, we actually come to student athletes. We come to the high schools and offer that service, which is great.

We have tremendous partners that help us along that process to offer that service. We come in, you sign up, and we're able to screen our families, um, at this, our student athletes, at school, you don't have to leave and take advantage of the information that is now sent over to, you know, some of the amazing physicians that we have in here.

And I would, I would like to say Ohio has some of the best physicians, if not the best physicians in the world. So you're in good hands.

Um and then our Carrie Chats, which is something that we really started to implement because we, we understood that there was a need to continue to help our families build character skills outside of, um, school and outside of being in a similar situation of, um, sometimes troubling times.

And so it's a quarterly, um, event to where we have some of our physicians on and we talk about courage, you know, fearlessness, um, self-esteem. You know, a big thing that we've noticed and understood within our kids is our scars are a big representation of who we are. And so we try to make sure that, uh, the self-esteem that you have within yourself, cons, consistently be empowered to understand that you're good enough.

Dr. Mayme Marshall: Right.

TJ Carrie: You are enough. In so many ways, I think that's been powerful for some of our families.

So, you know, the TJ Carrie Foundation, we try to make sure that we're providing a community that understands that this is not the end all process. This is just a small blip on the radar that, uh, doesn't deter you from still accomplishing some of the things that you wanna accomplish.

Dr. Mayme Marshall: Yeah. And doesn't define you. Yes. I think that's like one of the major obvious themes of your life, TJ is your heart disease clearly has not defined you.

TJ Carrie: Yeah.

Dr. Mayme Marshall: That's awesome. And you also have the TJ Carrie Walk and Run.

TJ Carrie: Yeah, the Run Walk. So this year we have the TJ Carrie 5K Heart Warrior Run Walk coming up.

It's an amazing event that we started about three years ago, really to continue to encourage our families with the ability and belief that physical activity is something that we can still actively do. And so whether you're running, you're walking, phenomenal opportunity for you to come out and be a part of it and, uh, experience what it's like to run against other heart warriors and challenge yourself in some way and capacity.

This will be our third year doing our, uh, run walkin. The first two years, my, my, my time, the first year was pretty good. It was first 5K out there. Um, as you know, I'm not a long distance runner, so I challenged myself and, um, I did pretty good.

But the, the purpose behind why we started to instill that was because we wanted our families to understand that there's a process to becoming more physically active. And in the, the process of us kind of doing some of the things leading up to the run walk is talking about nutrition and talking about, you know, health and wellness in totality.

Our last year's camp, two of our campers that came to Camp Carrie over the last few years ran the full 5K.

Dr. Mayme Marshall: Wow.

Dr. Pete Aziz: Nice.

TJ Carrie: And it was phenomenal. Right. Running along with [Oh that's great.] Them and seeing them [Mm-hmm] the growth in where they started to where, you know, they're running the full 5K and I just,

Dr. Pete Aziz: the confidence it gave them too

TJ Carrie: oh my goodness. Right. Oh my goodness.

Dr. Mayme Marshall: That's awesome.

Dr. Pete Aziz: Incredible.

TJ Carrie: Incredible. So I like to say if you can beat my time, we have a special prize for you.

Dr. Mayme Marshall: Okay.

TJ Carrie: Um, last year, I think I was around 27, but it wasn't my greatest time and I commit that to the course. Okay. The course this year is, it's, it's challenging right? Definitely an, an exciting opportunity for, uh, friends and families to, to come out and, you know, some of the things that we did do, there was blood pressure last year before pre and post-race.

Um, so we try to make sure we're incorporating health and wellness in, in all aspects.

Dr. Mayme Marshall: That's awesome. Thank you for sharing all of the amazing opportunities that are part of the TJ Carrie Foundation.

One of the other, um, organizations that I wanted to highlight is called Team Impact, um, cool organization that matches kids with any sort of medical condition with a local college sports team.

So as we kind of talked about, not all of our kids with congenital heart disease can participate with sports. And so it's a cool opportunity for kids to still get the benefits of being a part of a team. Maybe not doing a lot of physical activities, but they're invited to practices, they're invited to games.

I've heard stories of them, like going to some of the kids events, like celebrating at their like baseball game. Like the college team all shows up to celebrate. So cool event. I've had some of our healthcare partners that they're, um, kids have been involved, so that's just another organization out there that helps support activity and, [yeah] physical health, things like that, so.

TJ Carrie: Phenomenal. When you think about role models and looking up to certain athletes in certain, in instances, right? Kids, they see this, you know, athlete. And so for a organization to be able to pair that and give that kid that experience, whether it's at a college level, high school level, professional level to say, I met or they came to my practice, or he or she came, it's life changing.

Dr. Mayme Marshall: Yeah.

TJ Carrie: Life changing. Phenomenal.

Dr. Mayme Marshall: Well, if there's anything else that you wanted to kind of chat about.

TJ Carrie: Yeah. One thing that, you know, we, uh, AED's, you know, we worked with the NFL this year, NFL PA, to pass house bill 47, and I thought it was phenomenal to see all the of the amazing organizations come together after the DeMar Hamlin incident. [Yeah] to say, Hey, how can we continue to do more? Right?

And it's this continuous belief that there's more out there we can do. And a big part of like you stated, CPR training is being able to give families, bystanders the courage and the information to take a stance and say, I can save that life because I've practiced. [Mm-hmm.]

I've went through the process, right? And so they have this innate ability to want to step in instead of kind of being more distant to say that, um, I've learned this. And I can practice this, and I can do this, and them believing that they can do it, which saves a life because understanding where the a AED location is is half the battle in most cases.

And I think the understanding of whether you're in a, a gym where they're on the football field, uh, where you're on the court, wherever you are understanding, and, and it got me thinking, you know, when we started really working on this bill, I started looking at everywhere I went to. Okay. Where is the AED?

Dr. Pete Aziz: Yeah, right yes. We do the same today.

Dr. Mayme Marshall: Yeah, we do the same.

TJ Carrie: Yep. Where is it? You know, and so you have this innate ability to want to now be the difference maker in those situations. Um, and so I thought it was phenomenal. Uh, so many of the, the, the organizations and, you know, families and friends passing that bill and what it took for everyone as a, a, a collaborative effort.

So to say that that has been a big implementation now, not that it wasn't before, but now understanding the importance of why is it important for me to know where the AED is and how to actually use it.

Dr. Pete Aziz: Two things I want to focus on on that comment, and I thought that very insightful. I think thoughts there.

The first is, uh, whenever we see tragedy as a community, it all of a sudden reminds everybody what's at stake, right? [Mm-hmm.] And the DeMar Hamlin case, as tragic as the incident was, obviously it was a good outcome, but there is a heavy burden, uh, I'm sure emotionally for the folks that participated, the participants that were in the stands, mm.

Nobody would've thought an event like that would have some sort of positive outcome. [Wow.] And we see something like that. And, and then once I heard that his resuscitation was successful. I thought, what an incredible opportunity this is gonna provide us. [Mm-hmm.] Because everybody saw that, and if they didn't see it live.

I saw it live. My phone exploded with text messages. Yeah. What do you think happened and what's, you know, what's gonna happen to him and you think he's gonna play again? People ask me that. [Yes.] 30 seconds after this happened. And that's in the medical community and, and even my, my friends that know me.

To get from there to how can we use that incident to, to empower, like you had said, the community, to give people the opportunity to say, I can do something about this myself. [Yeah.] And it's not that hard. [Mm-hmm.] It doesn't take much training to do. [Mm-hmm.]

Everybody talks about, the second point I was gonna make is the cost effectiveness of this. [Mm-hmm.] You hate to bring that up 'cause it feels dirty to say even. Um, but the reality is that when you're having these conversations with politicians like we do, we go to the State House and we have to advocate for bills like this.

What they want to hear is, is this the most effective way to use taxpayer's money? [Mm-hmm.] Are constituents getting what they want? Are they gonna get behind this? And you think of all the, the diseases that we try to diagnose, how difficult like yours is, TJ, to diagnose some of them and we think is there a more effective way of doing this?

[Mm-hmm.] Can we use the communities will and, and drive and supporting compassion to say, maybe that's where the money should be. Maybe that's where we invest first. Mm. Get the AEDs where they need to be. Get people trained. Like they need to get trained.

And if we miss a patient here or there, which we're gonna inevitably do. Yeah. Is there some other safety net that is ubiquitous? [Mm-hmm.] And I think the more ubiquitous we can make this, the more successful we're gonna be and the less, sadly, the less athletes we gotta read about in the papers, you know? [Mm-hmm.]

And I think that's our guiding light here. Yeah. And I think you hit on that. Yeah. Phenomenal.

Dr. Mayme Marshall: So I've had parents of patients that tell me that their child is feeling different or excluded, um, because they have limitations or because they have a scar on their chest. So what's your answer to these families, um, that come to us with those concerns?

Dr. Pete Aziz: Yeah. We see this a fair amount from a provider standpoint. And TJ, you may come across this too, when you're meeting kids through the foundation that, you know, aren't pro athletes. [Yep.] That had a pivotal moment in their lives where, you know, probably didn't look the same way it was going to. Yep. And what small wins maybe they can extract without being an NFL player without, right.

What is, how do we redirect that energy? Yeah. You talked about that a little bit too earlier, you know?

Dr. Mayme Marshall: Yeah.

TJ Carrie: I remember talking about saying like, sometimes we can't play, but you can coach or you [mm-hmm] train. [Mm-hmm] right. You know, and so I kind of always. I always revert back to, you know, our condition. You know that that's not the defining factor.

There's so many other attributes that you are extremely gifted on, and I think sometimes it takes us understanding and kind of, sitting quietly to understand, okay, what are those things? What are the other desires that I want and I have, that I can still accomplish and be phenomenally at?

And I think that's something that I consistently tell our, our heart warriors is, okay, well we're not able to do this, but you're a phenomenal person in terms of being a coach, right? Have you ever thought about that? Right? [Mm-hmm.] You speak well, you talk well, you can lead in some capacities.

And so I think it, it, it's, it's always

trying to have that hard conversation, realizing that sometimes, you know, our dreams, like we said it again, are altered in some way. Doesn't define that they're taken away in that, in, in that aspect of it.

Dr. Mayme Marshall: I think it's a, I think a very good point, and I think a lot of times sometimes. Sometimes kids need permission to think about something else. [Yes.] So, you know, maybe they never knew a coach or they never, I mean, of course they have coaches on their own teams, but maybe they just never visualized themselves wearing a different hat or pursuing a different future.

Maybe they thought. And I don't have the skills. I'm not, you know, I don't have the confidence. [Mm-hmm.] I'm not a leader until someone looks at you and says, no, you are. [Mm-hmm.]

So I think that's really powerful too, to like help encourage kids, visualize a future, even if it's different than maybe what their dreams were initially like they can reimagine what that potentially would look like.

Dr. Pete Aziz: And I think that has to be, I love what I'm hearing. I, I totally agree. I think that has to be part of the initial conversation. [Yes. Yep.] Especially with us as providers, right? [Yeah.] If you're gonna take that away from a child, if you're gonna say they can't do what. I think probably Is there a dream at that time, you have to be equipped to, to redirect it.

[Yeah. Mm-hmm.] We hear, and I'm sure you, you have heard this too, the answer is no, and there's no resolution, right? [Mm-hmm.] It's just you can't play, your benched and that's kind of how the conversation ends and, and think we have to be better than that. Because uh, [yeah] that's devastating and, and kids don't recover from that.

[Mm-hmm.] That's all they hear after what ends up being a very complicated discussion otherwise. And maybe that's all the parents hear too. Because their hopes and dreams sometimes are dashed in that conversation as well.

So we have to be better about figuring out the avenues right for success for a child, if that may not be it, and and reinventing yourself and recalibrating that. [Mm-hmm.] Thinking about how that looks, practicing that in our minds as physicians. So when we have that conversation you know, we know what to say. We know how to say.

TJ Carrie: Yep.

Dr. Mayme Marshall: Yeah.

TJ Carrie: And it goes back to the team mentality of talking to mom and dad. Like are there other things that he or she's interested in? [Mm mm-hmm.] like, have you seen things that sparked their interest?

And I think exposure in so many ways is a big opponent of what are some of the other likes that, that they did like? Like one of the things that I used to like, is I cutting hair. I was a barber all through high school and [way] college and, and I loved it.

Dr. Pete Aziz: Imagine what you could've become, man, if you did that. That's so interesting.

TJ Carrie: Right? I used to cut all my coaches hair. I used to cut their kids hair. I used to cut, I used to cut hair before our games in college and got to the point where my coach was like, I'm taking your clippers. You're not,

Dr. Pete Aziz: you spending too much time doing this.

TJ Carrie: You, you need to focus on the game, TJ. And so like that was one of the things that, you know, I had, uh, in our family, my mom, my dad, my aunties there, there were a lot of members in our family who did, um, barbershop or salon services. And so I took, uh, interest to it. [Yeah.] It was like, I like this. Right?

And so there are things that sometimes come from, you know, the opinions of, you know, mom, dad, and so like, it's, it's a team effort.

Like there's so many other processes that go through that realm to say, well, there is probably something there. We just haven't threw it on the wall and seen [it's great] what worked. Right?

Dr. Mayme Marshall: Yeah.

Dr. Pete Aziz: You know,

Dr. Mayme Marshall: Dr. Aziz, TJ, I cannot thank you two enough for being here this time flew by. I know we could spend many, many, many more hours kind of talking and exploring all these themes, but I really appreciate it. I know you both are very busy people, so thank you for being here today.

Dr. Pete Aziz: Really enjoyed it. Thank you.

TJ Carrie: Thank you, Dr. Marshall. Appreciate you for having me.

Dr. Mayme Marshall: If your child has a heart condition and is interested in playing sports, or if your child has concerning symptoms with activity, we encourage you to reach out to their pediatric cardiology team to start the conversation about sports clearance.

If you'd like to schedule an appointment with a Cleveland Clinic Children's Pediatric Cardiologist, or in our Pediatric Sports Cardiology Clinic, please call 216.445.5000.

Speaker 4: Thanks for listening to Little Health. We hope you enjoyed this episode. To keep the little health tips coming, subscribe wherever you get your podcasts or visit clevelandclinic.org/childrens/podcasts/little-health.