Sports Clearance for Kids with Heart Issues (Part 1)

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 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. Welcome to Little Health.

TJ Carrie: Thanks for having us on here today. TJ Carrie, former NFL athlete, heart warrior, founder of the TJ Carrie Foundation. Our foundation is providing support for families who battle congenital heart disease socially, emotionally, and also trying to help increase the awareness of congenital heart disease.

So excited to be here. Thanks for having me Mayme.

Dr. Mayme Marshall: We're so happy you're here. And Dr. Aziz.

Dr. Pete Aziz: Thank you, Dr. Marshall for having me as well. Thank you, TJ. I know you're a busy guy, and, uh, it means so much to us that you're here discussing your work and, and, and probably more importantly, your, uh, your trajectory and what you've gone through. I think that's gonna really resonate.

Uh, I'm Pete Aziz. I'm a cardiologist here at the Cleveland Clinic. Uh, I manage, uh, heart rhythm disorders, uh, called an electrophysiologist. I also am the co-director of our sports cardiology program.

Dr. Mayme Marshall: Awesome. Thank you both for being here. TJ you are an accomplished athlete, a community advocate, a voice for patients with congenital heart disease. Tell us a little bit about how your heart journey started.

TJ Carrie: Yeah. Uh, you know, as a, as a young kid, and, and I'd say nowadays we're starting to see this process happen a little earlier, which is amazing in terms of detection. Uh, but early 13, 14 years old I think the symptoms originally started to happen.

And you know, as you're a young kid, you're playing, you know, majority of the time you're thinking any type of symptoms is just, hey, I'm not in shape, or, you know, I ate too much candy before practice. Right. And so you think these things are just common. Mm-hmm.

And at a early young age, we started to have a lot of dizziness at practice. And it, at, at first, it didn't seem abnormal and then the dizziness turned into a lot of shortness of breath. And the shortness of breath turned into, Hey, you're not in shape. Okay, so let's run a little bit more.

Um, and then that turned into, you know, sudden blackouts where it was like, you, you, you didn't know as a young kid what this meant. You told mom, mom thought it was odd. Mom and dad started to come to practice and started to see some of the same symptoms. [Mm-hmm.] And so, you know.

At that point, we were actually going into our, uh, our freshman year of high school when we did our normal routine checkup. Right? You gotta go and get your physical done. And, um, you know, definitely by, uh, a, a little angel in, in our physician detected, uh, that, Hey, there's something abnormal, I don't know what it is exactly, but I think you should do some further testing.

And that introduced us into going into Oakland Children's Hospital at the time. And at that time it was still very, um, it was a process to where they still couldn't pinpoint exactly what was going on, but, uh. It made us do some further testing.

And so I don't know what the machine is today, but back then I had to go to school, what I want to say, which is a somewhat of a EKG device where you wore it on your chest and uh, they listened to the rhythm of, of your heart. And you, I would wear this around in school and, you know, it was, it was a process where we did this for about three weeks.

And we finally detected that, hey, you know, you need, you need heart surgery. And as a young 13, 14-year-old, you, you're not thinking about heart surgery, you're thinking about video games, sports, and um, what are you wearing to school the next day? Right? And so we were hit with a, a pretty significant choice at that young age that we furthermore took.

Uh, we had our, uh, open heart surgery on Valentine's Day, which is a very special Valentine's Day. Um, our diagnosis was, uh, a right aberrant coronary artery, which I wanna say now is called an anomaly, um, in, in the field, which, um, it took us out for a little while.

Dr. Mayme Marshall: Yeah, February 14th is, um, the end of Congenital Heart Week. [Mm-hmm.] So it's a little bit ironic that your heart surgery was at the finale of Congenital Heart Week. Um, I thought that was quite cute when I saw that in your history too. [Yes.] It sounded like, you know, as you tell your story that you had a lot of non-specific symptoms. [Yeah.] As we would say as providers.

So countless kids will come into my clinic and they'll be complaining of sometimes chest pain, sometimes dizziness, sometimes shortness of breath. [Mm-hmm.] And those are really challenging symptoms [Yeah.] because yeah, you, you don't really know. Like those are kind of like, I feel like I had most of those symptoms this weekend as I was trying to get back into shape. So it's really tough.

But I think, I think that one of the important messages is for kids like you, 13 year olds are not very tuned into their bodies. So if they're having those symptoms to take them seriously. And good on your parents for kind of continuing to advocate for more workup, um, to kind of figure out, get to the bottom of it.

'Cause I understand it was a challenge to get to that diagnosis. [Yes.] I know it sounded like it took about a year of testing and [Yeah] waiting to kind of reach the diagnosis.

TJ Carrie: And I think that's the challenge now is, you know, I continue to tell our heart, heart patients and our survivors is, um, not knowing is not enough anymore.

[Mm-hmm.] You know, back in the day or when I was coming up, it was, you know, some of the things we just didn't want to know about because it required so much more after those things. And, um, finding the right diagnosis, which technology has advanced. Right.

And, you know, physicians, you all have been amazing in terms of being able to study these things in a more in depth way to now even seeing them in a fetal state [mm-hmm.] and saying, Hey. You know, this is gonna happen. And sometimes even performing some of these surgeries in the womb, which is phenomenals. And you know, like I'd say continuously big kudos to you all for saying, Hey, we can do more and always challenging the belief that we can do more in some way.

Dr. Pete Aziz: You know, TJ, you've highlighted um, so much I think in, in what you just said. And, and I, and I know that Dr. Marshall and I hear that story and we think, you know, of all the diagnoses that could have been possible and how your journey could have really changed, I think if, if it wasn't for some perseverance on, on your side and on your parents' side, some advocacy [mm-hmm] to say, Hey, something's wrong.

Because your symptoms are not that specific, right? [Right.] They don't scream out a diagnosis. Many patients have exactly what you had and they're normal. [Mm-hmm.] Uh, and the fact that you were, you know, captured for lack of a better term. Uh, in the sense that a diagnosis was made, we were able to figure out what was going on with you before something catastrophic happened [Mm-hmm] is the key. Right?

Not everybody gets the opportunity to say, you know, I'm, I, I have a heart problem, even though it's hard to diagnose, even though my symptoms are not specific, people figured it out. [Right.] And I was able to get to treatment and I was able to prophylactically, prevent something catastrophic.

Oftentimes, uh, we're looking at things on the other side of it. [Mm-hmm.] Something happens and then we're trying to figure out why that happened. [Wow]. So it's a beautiful story because it, I think it really highlights the importance of trying to figure things out before something bad happens [mm-hmm] of course.

And you know, to that end, I think to provide a bit of education with regard to how we as a medical community try to figure this out, how to, you know, find that needle in the haystack. It largely depends on our ability to screen patients, our ability to ask the right questions, to tease out family history that might be significant, to understand symptoms, even if they're subtle, non-specific. And know when to dig a little bit deeper.

So when most children see their pediatrician for sports clearance, like we're all mandated to do, there is a sort of a battery of questions that we ask as providers. Does anybody in your family pass away suddenly? Or in an unexplained way? Are people passing out in your family?

Um, do people have heart problems in your family that maybe weren't diagnosed? And sometimes you have to ask those questions in ways that are not as direct, because oftentimes the family doesn't know that there is a relative with a heart problem. So you have to ask things like, did anybody drown in your family? Which a lot of family members don't think that's related to a heart problem, and sometimes it is. So it's up to us to ask those right questions too.

The American Academy of Pediatrics has sort of a structured way of doing these screening for sports clearance and, and the questions that we had suggested as part of that.

And in addition is basically a physical, so a pediatrician will listen to their heart, make sure there's not anything abnormal in that physical, and if there is any of those screening processes, whether it's the history or the physical, then that would get escalated to a referral typically, to see a cardiologist.

A red flag pops up and you say, oh, you know, little TJ has shortness of breath when he exercises, let's get him over to a cardiologist and see if a cardiologist can figure out if there's another problem. Another layer to this that we haven't quite diagnosed yet.

And as far as concerning signs or symptoms, again, yours, were non-specific, but the ones that usually hit home are passing out for sure, especially if it's exertional. Somebody's exercising and they pass out, that's always a big red flag for us.

And the other is chest pain that's exertional. Most chest pain in pediatric patients is not related to the heart, but if, if somebody's exercising and they're having that chest pain, that kind of changes the metric a little bit and, and heightens our antenna to say, Hey, maybe something else is going on.

TJ Carrie: Wow.

Dr. Mayme Marshall: I, I think that was well said. I, whenever someone comes into the office and they're talking about exertional or exercise based symptoms, that always gets a cardiologist's attention. That's so, so it can be tough, um, to kind of flush it out.

And we ask a lot of kind of follow up questions to figure out like, was the chest pain a peak exercise or was it 10 minutes afterward? Or was the dizziness after you finished racing, you know, finished that a hundred meter sprint and then you got dizzy, or was it peak exercise?

So we have to do that kind of work to really flush out, because not all kids that are dizzy with exercise have a congenital heart problem. [Mm-hmm.] But you know, someone like you, a kid like you TJ, you know, besides those exertional symptoms, I bet your EKG was normal.

I bet that Holter monitor that you wore for three weeks was normal. The only thing that would've been abnormal is your echocardiogram, which is an ultrasound of your heart that looks at your heart structures, the valves, it looks at those tiny arteries, the coronary arteries that ended up being abnormal for you.

But that's probably the only thing besides those symptoms that you're explaining.

Dr. Pete Aziz: And even that test, as Dr. Marshall knows, because she reads these studies for a living, even then it's a hard thing to diagnose. [Wow.] So many patients that have this problem go through a screening test and they even have cardiology visits and it's still not even clear after that [wow] that there is an issue with the heart.

And, and this is something we see not commonly, but it's still something we see. It's very sobering when we do, because even when we try to do our best, right, it's still a difficult thing to diagnose.

Dr. Mayme Marshall: Mm-hmm. Mm-hmm.

TJ Carrie: How amazing that makes you all. Right, to say that there's all of these precautionary tests and like some of these things we still have to dig a little deeper to find what the diagnosis is. Like you said, like some of these things can all be normal and it can give us, okay, well these things are normal, but this one thing, this one test is a little off, so ah, what does that mean? Right.

Okay, let's do more. Now we gotta go back through the family history. Like, did mom have it? Did dad have it? Did cousin, auntie, grandma have it? [Mm-hmm.] Right. And so it just sharpens and really highlights, you know, the expertise that you all have and why you all are so amazing.

Mm-hmm.

Dr. Pete Aziz: Thank you for saying that. We're both blushing. If you can see

Dr. Mayme Marshall: I think one of the other tests that sometimes we'll offer kids too, is like, if their symptoms are mostly exertional, then we'll try to like, you know, um, make the symptoms show up with an exercise test. [Yes.] So sometimes we will put them on a treadmill. [Yeah.] Um, to try to see if we can replicate the symptoms with monitors on and kind of see if we can see what's going on.

That test often can be a really powerful form of reassurance for families as well, because mom and dad feel a lot more confident letting their kid play football or whatever sport if they've seen 'em run on a treadmill. Everything's okay.

Maybe the kid had the symptoms and we can be reassuring that the heart rhythm is normal, that the, the blood pressure response to exercise was normal. So that's another kind of test in our arsenal, um, that we can use, uh, when we have patients present like that.

TJ Carrie: Is that one referred to as the stress test?

Dr. Pete Aziz: Exactly. Yeah. I'm sure you've had a handful of those.

TJ Carrie: I've had a handful of them man. It, um, I can remember those things and, and it vividly in terms of, uh, having to perform on those stress tests. And, you know, that was something that, you know, was so unknown to us as a family as well, uh, to say that, okay, we're gonna put you on a treadmill and you're gonna wear all these patches on your chest and we're gonna try to make sure you're tired when you do this.

And so, [mm-hmm] fun at the time. Now you really understand the importance of the test. Right.

Dr. Pete Aziz: Yeah. Yeah, for sure. Yeah, for sure.

Dr. Mayme Marshall: So TJ, after your surgery, [yes] I imagine there was quite a bit of rehab that you were doing a lot of like strength training again. How did you get back into physical activity after your surgery?

TJ Carrie: Yeah, it's a process. And I would say you, you really have to have a team around you and the team, you know, just like any team that we play on in sports, it's, it's built around a lot of different core members on that team to help you, uh, be successful.

And so physicians, you all are, you know, of course the star of that team. You know, you're, you're giving us the direction, the insight, you're customizing the plan to say, all right, this is what we have to worry about. These are some of the things that you have to do. Here's some of the things we gotta watch out for, and here's how we're going to implement that process.

And so one is definitely listening to the quarterback. Right? They're gonna always put you in the right position in the, in the state that you're in. And then the next is support, right? Who are your linemen and your receivers and your running backs, and you know, you got mom, dad, you know your support system.

I come from a big family. It's five boys in our family. [Mm-hmm] and I'm the fourth. So naturally football was a part of our sport family. And so the recovery process, my oldest brother was a big part of that team. You know, definitely friends within that space that he had, that he built around him to help us kind of get back to that process was, you know, it, it came to first eating, you know, what are we eating?

You know, how is eating affecting what's going in our body? And he would always tell me, man, you're like a sports car, right? Sports cars take the highest premium gas, right? So that doesn't mean that we can, you know, put things lower than that because this body needs to last for a long time going into trying to achieve the goals you wanna achieve.

So we did a lot of eating. Right. My brother was vegan. He still is almost 20 plus years. [Wow.] And so, you know, there was a lot of implementation of how we could implement some of those regimens in, right. More so veggies and healthier food, making sure we're always hydrated.

Then the workout sessions. [Mm-hmm.] It took a lot of 'em. And I can remember vividly that, you know, when I was in high school recovering from this process, we did morning sessions, we did normal practice. And then my brother would actually make me commute about an hour to his facility and we would do other physical activity recovery, right?

[Mm-hmm.] So that would be breathing, that would be a lot of stretching, right? Stretching the chest cavity and how can we protect the chest cavity for impact? [Mm-hmm.] Um, so we did a lot of, you know, a lot of manual calisthenic lifts. And then it was the process of, okay, how do we get in shape? Right. And so running's a physical, you know, high performance process.

So we did a lot of pool exercises, a lot of swimming, a lot of workouts in the, in the pool. We did, uh, a lot of track workouts. My brother was built on track workouts. And then we did a lot of heels, which I didn't like. Those, those were always a challenge.

Uh, my coaches, right? Those were always, we had to come up with a game plan with, okay, how is TJ gonna practice? [Mm-hmm]. And I think the big thing that we kind of fight is we're putting ourself out there. Right. But we're also, we have to understand the responsibility that the coaches have. [Mm-hmm.] And you know, they take on a big responsibility with saying, Hey, okay, we're gonna allow you to come back and play.

Dr. Mayme Marshall: Right.

TJ Carrie: But also understanding like as a coach, even as a physician, like there's, there's still that in the back of the mind like, okay.

Dr. Pete Aziz: This, this is exactly what I wanted to talk to you about, TJ. 'Cause I think for us as healthcare providers, you know, our calculus is different because we see, we see a disease and we say, is this disease treatable? How effectively was it treated? And is it safe to go back out and play? Right?

We're gonna talk about this, but I wonder what did that construct look like for you when you were a little kid, uh, before you were an NFL player? Right? [Right.] This, this is, you had probably shown some prowess on the football field, but I, I would imagine most people didn't think that you were going to become [right] what you ended up being.

So for people to have that faith and, and for people to support you, I think probably was, there's probably a lot of conversations maybe they didn't even hear about at that age.

TJ Carrie: Yeah. Yeah. And a lot of patience. And I think so often, sometimes patience is sometimes seen as something that holds us back. But in all actuality, patience gives us the, the ability to have progress in the long run.

And so our first year of recovery was just getting back to normal activity. [Mm-hmm.] Like, let's just walk, let's just do body weight exercises. Let's just figure out what your body is capable of, right? Let's not even introduce physical activity. Let's just do a lot of just very baseline things.

And I think that transition and that process started with our physician. We sat down, we said, Hey, this is our goal. And it was a very steep goal at the time to say, Hey, our goal is to play the National Football League. Mm-hmm. And in the beginning it was let's work past just getting to day one and day two after. [Yeah.] Right.

And it wasn't just like, okay, we're gonna totally abandon that goal. It was just, let's just start here first. It took a lot of courage and for even the physicians to say, all right, okay, we're a year out, you know, let's come in, let's do a couple more stress tests, let's do a couple more testing to figure out where we're at. And then from there it's, okay now what's the next process?

And so I think patience is a key that's needed in all families that are, are experiencing congenital heart disease, and then a tremendous amount of trust and courage from you all as physicians to say, okay, we're gonna loosen the reins a little bit at a time.

Because any patient that you all work with, they become family in some sort, right?

Dr. Pete Aziz: Absolutely. Mm-hmm. Absolutely.

TJ Carrie: They become family and it's like, man, I remember, you know, this young kid or this young, young girl or young son. I remember we did a procedure on them when they were 10. Look at her, she's 20. Right.

Dr. Pete Aziz: You feel like you're part of that journey. Yeah. Even though you may not be, you feel like Yeah. Right. You feel like you've been there the whole time.

TJ Carrie: The whole time. Yeah. You are right. Yeah. And so it, it, it's a process and I continuously, Dr. Culberson, Casey Culberson was one of the physicians that worked with me and I talk to him, you know, every few months and just, you know, I'm very thankful of his approach to say, we're not gonna just completely shut you down. Right. We're gonna build a plan.

Dr. Pete Aziz: Right. I was waiting for you to say that. Yeah. 'cause I think, you know, and, and again, we're going to touch on this. I think for physicians, the easiest thing for us to do would be to say you're benched, right? [Mm-hmm.] You're not gonna play anymore. Your career's over. Yep.

It takes courage. Like you had said, both by you and by your physicians and your coaches. [Yep.] Like you had mentioned to get you back out there and figure out a way to do it safely, right? That's, that's the objective. That's the goal. So it sounds like that all happened with you. Yeah. Which is incredible.

TJ Carrie: Yeah. Don't bench us. Just, we just need the right game plan. That's all it is. [Yeah]. You know, you all are, you all are the coaches and, you know, every athlete can, can thrive at the right system. And that game plan includes the physician, includes mom and dad, it includes the coaches, our coaches.

Even when I got to college, we put in a a a a couple clauses where, hey, you gotta go get, you gotta go back home and get tested every year. Right. So our coaches sent me back to California and we did stress and we did Echo, EKG, and we did all of the testing.

So it's a game plan within everyone on your team [Yep. Mm-hmm] that is congruent to say, all right, this is the most successful plan that will get you to, to where you want to be.

Dr. Mayme Marshall: With you, TJ, like there was no traumatic event on the football field that led to your diagnosis. Um, unfortunately, not all of our patients have that. Yes. And so I think one of the things to mention we would be amiss without mentioning is AEDs. [Yes.] And how we could help support families if there is an event like that. Yes.

Dr. Pete Aziz: Uh, you know, like you TJ, most of my patient population is dealing with patients that have high risk for events like this. Many of them obviously are diagnosed so we know what their disease is and they're in the process of treatment, or they underwent a procedure and we think that, [mm-hmm] that risk is at least attenuated to some degree, if not hopefully zero.

But there's risk, right? And, and this is what we have to tackle. As Dr. Marshall said, many of those patients have already had some sentinel event where they're exercising and, and they go down and they have an arrest, and, and they're resuscitated. And, and fortunately those efforts are, are largely by, you know, heroes out in the community that know exactly what to do and when to do it.

But for those that are fortunate enough to, to be able to participate again or have that opportunity afterwards we have to devise this, you know, this scheme much like you experienced where everybody that's gonna be involved is on board and part of that conversation is knowing where AEDs are and knowing how to get to them.

[Mm-hmm.] So we'll tell, for example, a soccer player of ours, if they're out in the middle of a field, they gotta know where an AED is at all times and somebody's gotta know how to use it. So the parents also have said, well, you know, we want our son to play soccer. We want our daughter to play soccer. We're willing to do whatever you ask us to do to make that happen.

So the families will take that on and they'll say, we're gonna buy our own AED and bring it with us, and we're gonna get CPR trained and, and not have to rely on others. That is obviously one way of approaching this. Many other families, uh, talk to the coaches, and the coaches are that person. So it, it sort of depends on that dynamic.

But that conversation has happened with all of our patients that we think have that risk and, and, um, hammering that plan out. We call it the, the, the safety net, this action plan where everybody knows what to do in case something happens. [Mm-hmm.]

What we see, of course, is for the undiagnosed patient and somebody goes down, people sometimes are staring at one another. They don't know what to do. They, for a child, don't always think that it's a heart problem because kids don't have heart problems, but obviously they do.

A perfect example of how this goes, right, as I'm sure you know, is the DeMar Hamlin story that was [mm-hmm] nationally publicized. There were trainers that were there. It's rare to see intervention happen that quickly. And of course DeMar Hamlin's outcome, I think is, is signs to that, that's the evidence, right, that it works, right, is that's what could happen in a situation.

Dr. Mayme Marshall: Chest compressions with pads on is it a very impressive challenge. [Yeah.] You know, trying to figure out that.

Dr. Pete Aziz: Yeah, that's right.

Dr. Mayme Marshall: I think every medical professional was rewatching that [yes] resuscitation and impressed with the way they handled it.

Dr. Pete Aziz: And you could tell just like the players practiced the play, the, the trainers practice that. Right. They, [yeah] they go through those motions of getting the pads off and getting the AED pad's on. [Mm-hmm. Right.] And it becomes sort of, you could tell it's just second nature. I mean, there was no thinking that one in went into that it was,

Dr. Mayme Marshall: and they saved his life.

Dr. Pete Aziz: And they saved his life. Amazing.

Dr. Mayme Marshall: So I guess my plug to the people listening is if you're on the fence about getting CPR trained, here is your moment. Here's your invitation [yes] to, to sign up for that course because it truly does save lives. [Mm-hmm.] And being prepared, um, practicing on a dummy so you know how to jump into action if, if it arises, um, really can make a huge difference to that patient.

Dr. Pete Aziz: And I think you, Dr. Marshall, speak to our limitations as providers in that we can't identify everybody that is gonna have an event because they don't have symptoms, because they fell under the radar. So many reasons.

And we have to be prepared, I think, as a community to say, if we're going to miss some of those patients, how are we prepared as a community to help. And, and I think what, what you would mention with with CPR and AEDs is, is spot on.

I think the other side of it is once we do identify those patients, how do we as physicians say, let's do the right thing and not bench somebody, but say, how do we make this work again, like your team did.

Always a harder decision, but I feel like in most cases, the right one with probably very rare exception to that.

TJ Carrie: How is that game plan created on you all's end? Right? Because you see so many different complexities and you know, I, I always like to think that, you know, our dreams and ambitions as young teens and young adults, right? Sometimes they can alter, they are not, um, taken away. But instead of playing football, you may have to coach. [Yeah.] Right.

And so still having the realistic understanding that yeah, you were athlete and you know, your condition or your symptom may have altered the course of being a, you know, all star athlete, but now you can become an all star coach, so you're still in the game. Or you can be a trainer or you can be a nutritionist. Right.

So I think there's always the, the process of how you all come up with your game plan to say, okay, here's some other options that we can pursue. Um, is there a process to that? Because you see so much now in terms of heart disease.

Dr. Pete Aziz: A hundred percent. Not only is there a process, but I'll, I'll tell you the outcome of that process is different almost every time we do it. [Mm-hmm.] Because it depends on the patient. It depends on the sport. It depends on the disease. It depends on their parents. Right? [Wow.]

So everybody's gotta be on board. If we decide that we want, you know, a, a son or daughter to be playing, [yeah], we gotta sign up for it. The coaches have to sign up for it. [Yeah.] The school does. It's very layered.

But again, the, the reflex to say no is the easy way out and usually not the right thing to do. So instead we say, let's just start by talking about it. [Yeah.] And then once we understand what everybody wants, you know, if it's a TJ that wants to play football, that I'm sure told many people around you, I want to be in the NFL like you had said. [Yeah.]

If that's what a patient tells me, then we look at the parents and we say, how are we gonna make this work? Right? [Mm-hmm.] What can we do as a medical team to make him safe? What can the parents do as their care providers to make them safe? What does the school do? What, what is everybody's task to get there?

And if the ultimate decision is be a coach, then as long as that's something that people are on board with that provides autonomy and what we call the shared decision making model, that's the most important part of it, right? Is that everybody's bought into it. Everybody's invested in it somehow.

Because if one person's not invested, it clashes and it creates division and it creates a none smooth path going forward, and it just doesn't work. [Yeah.] So there is an investment, I think in the beginning in terms of having that conversation to figure out what the wants are, but that's where it has to start.

[Yeah.] You can't, as a doctor, you can't just start to prescribe what you're gonna do next. [Yep.] 'cause it's gonna fall flat, especially if you have. You know, a high profile athlete that is not gonna hear you once you say that, the conversation's over. Yeah. No,

Dr. Mayme Marshall: I think too, there's unrepaired congenital heart disease. [Mm-hmm.] Is sometimes in a different boat. Sometimes we do have to restrict kids. And one of my mentors, as I was going through my training, was like her least favorite thing to do was to restrict kids from playing sports. It's just never a fun conversation, but sometimes it is necessary.

And as Dr. Aziz said, like it does depend on the sport. So maybe there's a kid out there who loves football, but they also love tennis. [Mm-hmm]. You know, maybe we can make those compromises. [Right, right.] Or maybe it's something where, you know, he likes being, or she likes being in the weight room. So great. We love weights, but don't do those one rep maxes, you know, pump out five to 10 reps and we're happy. But one rep max, we know can be really hard on our aorta. Things like that.

So there, there does have to be kind of compromised both ways. And I, I don't think, um, our point or Dr. Aziz's point either is that all kids can participate no matter what, um, of the congenital heart disease. But certainly we wanna encourage kids with congenital heart disease [Yep] to get out and play, to ask the questions, working with their providers. [Yep.] To kind of make a plan.

Like we know that physical exercise is so good for our lifelong cardiovascular health. Yep. So we don't wanna bench our congenital heart kids. We wanna get them out there. And so, working with your team, as you so eloquently described [mm-hmm.] Your, your football analogy there. [Yep.] Um, working with your medical team to help encourage physical activity is so, so important.

TJ Carrie: Yeah. Education is exactly what I hear you talking about, educating. [Mm-hmm.] Uh, communicating, giving them the knowledge and the understanding of, hey, why? Right. Asking let, letting them understand the why behind, Hey, let's, we're not gonna do the red one rep max because of these things. [Right.] But you can do the five reps, the 10 reps. Right. [Right.]

And so I think that's a big part too, that sometimes as families we hear the, [the no], the no. Right. [Right.] And not understand the why. [Absolutely.] Or, hey, this is, let's just educate about this situation so you understand and have the capacity to say, oh, okay, that makes sense, right?

And so I think that's exactly what you, you know, we've talked about here is how powerful education is regarding heart disease in so many different capacities, and there's levels to education that we're gonna continue to try and provide and, and give and, and share so that families understand the process.

Dr. Mayme Marshall: Absolutely.

Dr. Pete Aziz: Well said.

Dr. Mayme Marshall: So you said you're one of five boys? Yes. Is that what you said? So how did your parents like not put you in a bubble [oh man] after this? I mean, having five boys, I can't imagine. And you're one of the little ones too. You were four or five. [Yep.] So how was it like little TJ [Yep.] don't rough house, don't like, don't hurt your brother.

Like how did your parents, you know, get through that? Like your fragile Yeah, he's a heart kid. And then let you get out there and make tackles and play hard and like push yourself.

TJ Carrie: I was definitely the special one in the bunch. And uh, I can say that, uh, fully confident in understanding that, you know, like you said in the house, I was bubble wrapped. You couldn't touch me. I could do whatever I wanted. And I got away with a lot of those things.

You know, mom and dad, you know, made it very clear of the situation and they're still protective of me now. Right. That bubble still hasn't really went anywhere. [It's not] yes. As I, as I've grown um, and you know, it was a unique situation in terms of, as we go back to the team mentality, right?

The team at home was, Hey, this is why you can't hit your brother. This is why he can't do some of these things. This is why he can't eat what he eats, so don't try to sneak him any extra at, at dinnertime, lunchtime, right? And there was a clear understanding of the process.

And, you know, I have to commend my family because

one of the things that we see now within our foundation in our camp that we continue to provide program with is, you know, the siblings, they take a backseat to the, the full situation [Yeah] of what's going on to our heart warriors. [Mm-hmm.] And me, myself, understanding that, that, you know, mom and dad spend extra time with young TJ and that time was, it had to come from somewhere, so it came from time that they could have spent with the other brothers.

And, you know, at a young age you don't understand that. But now that you, you, you get older, you understand and realize that the sacrifice was made by everyone. It wasn't just made by young TJ, it was made by mom, dad, brothers in, in total. And the whole family made a sacrifice to understand that this is what he needs, and we're all going to cater to him to make sure that he can provide the, the, the lifestyle that he wants in terms of the dreams and ambitions that you have as young kids.

Dr. Mayme Marshall: Right.

TJ Carrie: And so is this nerve wracking? My mom and dad, you know, I can remember playing and the one thing that they did not like the most was punt return. They didn't like me playing punt return, kick return. Those were the two, right? They, those were the two they did not like, and they were like, you know, son, I, I think you should just give that up. I don't, you, aren't you ready for that?

And even playing in, in, in NFL, it was, they never, they never got over that fear. And, and it's, it's not necessarily getting over the fear, it's understanding where the fear comes from. [Mm-hmm.] And understanding how we can overcome the fear and, and prepare ourselves for how do we get us in the best possible situations in every position that you can be in. [Right].

And I think that took a lot of courage, once again and foresight from mom and dad to say, okay, we're gonna start allowing you to play track, no tackle. [Mm-hmm.] Or seven on seven, no tackle. And it was just step by step. How can we give you a little bit, but understanding what that process looked like. So it, it was a journey.

I, I always tell our heart warriors now it's a, this is a marathon. [Mm-hmm.] This is a marathon. This is something that's with us for the rest of our lives. And that's okay. It's a process of who we are. [Mm-hmm.] It, it, it builds character in so many different ways and it challenges us in, in so many different ways.

And I think success when it comes to heart disease in a total, we think it's a straight line, but it's hilly, it's you know windy, you know, and there's so many things that kind of you go through that prepares us for, uh, the thing at the end of the tunnel.

Dr. Pete Aziz: I appreciate what you said about what your parents went through and what your siblings went through, and I think the, the folks that are listening online are probably like, yes. You know that that is exactly what we're going through. It's, you know, it's an investment right. To have, you know, a, a child that has congenital heart disease and it's not just an investment for that child. [Yeah.] It's an investment for everybody around.

Dr. Mayme Marshall: Yeah.

Dr. Pete Aziz: Everybody's making a sacrifice and there's probably, and I'm sure there was for your parents, this element of guilt too, that they want to be hanging out and [Yes] right. And applying more energy to the kids, but they just can't, 'cause there's a ceiling to everything.

[Mm-hmm.] That, that's gotta be incredibly challenging for our families too. And, and I think it's great that you had touched upon that and, and how your parents manage that and [mm-hmm] struggled with it, I'm sure at times.

TJ Carrie: Yeah. Yeah, we all struggle with it. And, and, and, and the beauty of it is that everyone found an understanding and we came to a commonality of, Hey, we're willing to sacrifice this for the greater good.

And I think that's, you know, the, so much of a powerful instance of family and the support goes back to the support in your team to, to understand what that process is like.

Fast forwarding into now where I'm in my thirties, right? And my brothers are all older, them not mentioning that, man, you know what we did to, for you to get, you know, and so them still not having that, right? It was an accepted sacrifice, right? [Mm-hmm.]

And so for them now, even as they are in their stages of life, realizing that that was a part of that process and we have no regrets.

Dr. Pete Aziz: Yeah. Right.

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 it for having me.

Dr. Mayme Marshall: This concludes part one of this episode. Please join us for part two as our conversation continues on little Health. 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 my.clevelandclinic.org/podcasts/little-health.