His body kind of tells him what to do. If he needs to take a break, he’ll stop, he’ll be tired. Because that is a concern, in the future, and the long term effects. He’ll never be able to run a marathon, his body just won’t let him. He’ll always breathe a little faster, certain things like that. Expectations are he’s going to have a normal life though. They told me, long term effects, contact sports are obviously out but that’s not even an issue right now. Hopefully there’s nothing to worry about.

 – Lindsay, mother of Brian, age 2, Heterotaxy


She was cleared last fall from Dr. Lang to be able to play soccer, she always wanted to play soccer and wasn’t able to, and he gave her the go-ahead, so that was like, the biggest thing. I was a nervous wreck the first couple of games watching her go up and down the field most of the game, but she did great. She wasn’t ever short of breath, she held her own, she has a natural ability for soccer and now she found her little niche.

 – Roxanne, mother of Amelia, age 7, Dextrocardia


Currently Alexandra is doing a basketball club, she plays piano, and she was in the running club in the fall. That will pick up in the spring if she wants to do the running club again. Now, mind you, it’s third grade running club.When she was little her doctor said, “Often we say no contact sports” because she played soccer when she was little. I think that’s really more when they get older. He said, “And that’s a conversation we can have if she gets into a sport and really wants to do it. I do have patients who play contact sports.” I’ve talked to the gym teacher and said, “Just so you know, Alexandra is not really supposed to be super aggressive” and as her gym teacher kindly put it, he thought it would be okay because I don’t have super aggressive girls. So he was not worried presently.

But it’s interesting, Alexandra sometimes in running club didn’t run as much as the other kids, and Dr. Alexander said, “Some of this is just how Alexandra is.” So I do ask questions that I may not have if she didn’t have a pacemaker, if that makes sense. Like, “Oh, Alexandra sometimes walks and doesn’t run the whole thing, but she has a twin who runs the whole thing. Is this something going on with her pacemaker?” And he said, “That just might be Alexandra’s temperament.” But she swims, she does a tennis camp, they did canoeing camp, and does all the stuff that everybody else does in gym, so I think at this point I haven’t felt that she’s limited in any way. And we asked Dr. Alexander, because we were thinking about the next school and some of them require sports, and that’s when he said the high bar in gymnastics could be damaging to a pacemaker. She is not a gymnast, so I think we’re okay. But she remembered that.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker


For the first two years of her life I carried an AED with me everywhere we went, to the grocery store, everywhere. Which, they’re not light, so it was kind of a constant presence. At least for Willow, she hasn’t really been interested in doing a lot of sports, she’s more of a reading, music—those are her interests, so we haven’t had a lot of problems with restricting her activity. She has been able to do what she wanted to do for the most part, although I have not allowed her to get in cold water. If we go to the beach with friends, she has to stay out of the water, which is challenging, especially for a young child to not be able to do things that her friends are doing.

 – Catharine, mother of Willow, age 8, Long QT Syndrome


He’s an all-star baseball player, he’s a great golfer, he’s an A student, he plays the drums in jazz band, he’s—but I think that’s because of us, me and my wife. Because we don’t treat him any different.

 – Scott, father of Austin, age 10, TOF


She’s not supposed to do isometric activities, so that’s push-ups, wall presses, climb the rope that they do during that one time in gym where they have to see how many sit ups they can do and how many push-ups they can do and how high they can climb on the rope and the bar—she’s not supposed to do any of that. We were able to get clearance from her cardiologist to allow her to do a few push-ups and a few sit ups, so maybe she does 30 seconds instead of the full minute, or she’s allowed to stop when she needs to stop. During the mile run, they do that every year, she doesn’t have to run it. She can walk it, she can pause—of course she never does, she is going to prove to everybody that she can be just like everybody else, so she does the mile run and she runs it the whole time. The gym teacher comes and talks to me quite often because she’s doing too many sit ups or she’s doing too many push-ups, or she’s doing too many of the planks. So then I have to have the conversation with her again, and the teacher will go over and talk to her. We’ve come up with plans where if she’s doing the plank, every 30 seconds she just puts her knees down for ten seconds, so none of the other kids can see it, but in her mind she thinks that everyone’s watching her and everyone notices that she’s doing it different. So I’ve been trying to tell her, “The kids notice when the teacher walks up to you and tells you to stop doing something. They don’t notice when you just kind of sneaky stop it on your own every now and then, so that’s going to get you looking less noticed.” But she’s a really determined kid and she really doesn’t want to do anything different from anyone else, so she pushes herself, and she does some things that she’s not supposed to. It’s the age, I expect that this is what she’s going to do because she’s 12 and a half and that’s the age of the eye rolling and the “I can do it” so it’s a little bit more of a challenge now than it ever was before.

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker


Before Chloe’s cardiac arrest, she did gymnastics, ice skating, and swimming, she was about to join the swim team. After her arrest, they said there’s three things she can’t do, one is gymnastics, the other one is skating, and the other thing is swimming. So as you can imagine, Chloe is very active, even though she was only six years old, she was very active in all her activities. So we had to think about new activities, but activities that she wanted to do, not what we wanted her to do. I wanted her to sit at home and do crafts all day, but that wasn’t happening. She decided she was going to do Tae-kwon-do, which is a form of Karate. I was a little anxious about that because, well “Fighting, really? This is where we’re going?” But again, we spoke to Dr. Alexander about it, and he said it was age appropriate. She does have to take some precautions, like wear a chest guard, but she can do it, and she’s done that for seven years, and she’s now a black belt. She actually teaches classes, so she’s done incredibly well on that. My next step with it is are we going to come to a point where I’m going to have to come around to her and say, “Sorry Chloe, you can’t do this” or will there just be some aspects, “Sorry, you can’t do it competitively. You can continue to teach, you can continue to take classes, but you can’t make it competitive.” They’re small things, but they’re part of a teenage girl growing up. What is she going to do? She now plays the drums. So she’s big into that, she’s got her own five-piece drum set in the house.

Sometimes in gym class at school, or even at her Tae-kwon-do, she’ll say, “I need to sit this one out, I’m done.” She is monitoring herself. If she feel her palpitations getting too fierce, she’ll say, “I need to sit down.” And I’ve spoken to her gym teacher, I scared the living daylights out of him, I said, “Don’t push her. I know as a gym teacher that’s what gym teachers do, but don’t do that to her. If she says to you ‘I need to sit down’ just say ‘Okay Chloe, go and sit down’” And he listens. She tells me he does. Certain things like basketball she can’t do, so she has to sit out because of the contact. Because if she gets a ball thrown at her chest, it’s the contact more than anything, or a fall, she has to be very aware of.

 – Jim, father of Chloe, age 13, CPVT


She accepted it. I think because I’ve been through it, it was very helpful for her to know, “Okay, it’s like my mom, this will be okay.” It was really a tough blow having the sports taken away—all of them, all sports. She was varsity soccer, hockey, and lacrosse player. So that was all taken away. She turned to academics, she joined clubs. She joined Model UN, she got interested politically in things, I think one of the things for her is she keeps going, going, going. She doesn’t do downtime really, she doesn’t like down time, she is the most active kid of all of her friends in college as far as she’s in the library or she’s doing an activity or she’s campaigning, or she’s always on the go. And that’s probably how she copes with it. She can do yoga, but she can’t do hot yoga. She gets on the treadmill, she sees a therapist.

 – Amy, mother of Rebecca, age 19, ARVD


Melanie: He’s usually very active on the water—water skiing, tubing, what teenage boys do. The more air they can get and everything. He couldn’t do any of that, but he was normal in other ways, other than taking his medication. And of course he wanted to go be with friends and do things and I was like, “Who’s going to watch him? What if something happens?” So it was very hard from our perspective. The first time he went to a friend’s house, I was a wreck. Walt’s probably worse and just doesn’t verbalize it as much as I do, but the friend’s parents we know really well, and the dad’s a physician’s assistant, so I was calling, “Is there an adult there? I can’t let him come if there’s not an adult there” and she goes, “Yes, my husband’s here,” and I’m like “Okay.” So it was very hard because if you didn’t see the scar, he looked completely normal, so it was very hard to kind of keep him down, because he really wanted to do more. He felt great.

Walter: He had also gone through the ACL surgery, and he was laid up, his leg in support braces—

Melanie: —this was all about three months post-op from the ACL.

Walter: Yeah, so he’s four weeks into walking without a brace—even without the heart stuff, there’s a lot of physical stuff that he wasn’t going to do simply because of the ACL surgery, so that made it a double-whammy that put a clamp on what he could do.

Melanie: From my perspective, it was hard to see him not be able to do stuff. He had one friend that was really super about coming over and hanging out with him, because they’re really limited for the first six weeks or so. And then when he came back at six weeks, then his doctor let him go into pre-season doing non-contact, so he could do the cardio. Then he was a happy camper. But not knowing what that tachycardia event in the hospital was made it very scary afterwards.

Walter: Just before we had gone to his ACL ortho surgeon, and he checked his leg out and basically signed off, “He can play soccer” so he’s coming down here and he’s got one cleared-

Melanie: Now he needs the cardiac clearance—

Walter: So Dr. Newburger says, “Eeehh, okay fine.” We didn’t say anything about how soon it’d be that he’d play in a game or whatever. We got in the car—

Melanie: We weren’t even in the car, we’re walking to the parking garage and he goes “What time is it? How long is it going to take us to get home?” I told him and he goes, “Good, I have a game at six.” And he played some in that game!

Walter: I called up the athletic director at the high school and said, “We got copies of the releases, we’ll bring them for the coach, we’ll drop the other ones off tomorrow morning, he can play.” So he shows up, gets his uniform on and he was elected one of the captains of the team and the whole team just cheered.

Melanie: It made me cry.

Walter: His recovery wasn’t bad because he had an objective, that three month objective to get back to soccer. He knew he was going to miss about three games, but he had this drop-dead date of the middle of September, whatever it took, whatever he had to do to get there, to get cleared, that was his total focus.

Melanie: If he hadn’t had that, I really think it would have been way harder for him emotionally. But Dr. Emani telling him the less than expected recovery time the day before surgery just turned everything around and he was so determined. What was hard was that between the cardiac surgery and the ACL, he was not the same player, he wasn’t as good. He was the fastest player on the team prior to that, and he didn’t have that. We called it “turbo speed” that he usually had. He found that very, very frustrating. He actually had more struggles after he got back to soccer and realized that he wasn’t the same player.

Walter: Yeah. But it wasn’t because of his heart. It was more because of the ACL surgery and recovery from it, and it just didn’t feel the same, he didn’t have the confidence. It actually took about a year and a half before he finally said, “everything feels okay” and he was confident and he was at college and he was playing intramural soccer.

Melanie: Now he feels like he’s back. He thought he was going to be fully back when he started playing, and he wasn’t and he really struggled with, “I’m not as good as I was.”

Walter: Even though the ortho surgeon told him, “six months he can start back but it’s not going to be fully the same.” He didn’t think that piece of it out.

 – Melanie and Walter, parents of James, age 20, Anomalous Coronary Artery


He is the most passionate sports fan you’ll find. He did karate when he was little and he played baseball when he was little, but he could never really keep up. His stamina never really could. And when they went to the big field in baseball, running the bases was just really hard for him and the coach wouldn’t play him and it was just a very frustrating, sad experience for all of us. But in high school he got to a point where he didn’t let that get to him. He went to all the sporting events, he was friends with a lot of athletes, and it wasn’t as much of an issue for him that he couldn’t play sports.

His brother is a really big athlete. His whole high school identity was around sports, he was really good at them, so that was hard. But by high school, Jake was more comfortable place with that, I was still struggling with it. My husband pulled me aside one day and said, “You’ve got to check that attitude, because if Jake catches even one whiff of that from you, he’s going to feel that about himself, and we can’t give him that. This doesn’t make him who he is as a person.” And I was like “You’re right.” The “woe is me” stuff, he should not be getting that from us. If he feels it, we’ll deal with it, but “Don’t let him pick it up from you.” And I was really kind of annoyed at my husband when he said it, because I don’t like being wrong, but he was right, he was totally right. Now, Jake’s in college, he has worked in the athletic department at his college for two years, he’s a supervisor, he loves it, they love him, and he gets his sports fix. And I don’t think it bothers him in the least that he’s not playing, I think he just loves being around it. So he has found a way to be around it all the time without needing to play.

 – Diane, mother of Jake, age 21, HLHS


Richard: I think David’s experience growing up was you would never know there was anything wrong with him.

Courtney: Ever.

Richard: Other than playing soccer and other sports. And I guess kids with Tetralogy of Fallot, they get winded, they tend to lower their center of gravity and they just get all the way down on the floor. They squat, and we started to see David doing that and his upper lip, it was a little bit blue. So there were instances where you’d have to remind yourself that David was going through this process, this journey that was different from other children. Because so much of the time after the first surgery, other than the annual check-ups, there really wasn’t much to keep reminding you of what he had gone through or what his life was like. So sports was one of those things that was a reminder.

Courtney: But he played competitive squash and went to the championships every year. He played soccer—you had to play a sport every season at his school, so he ran track, that was hard. It was football I think freshman year, but he didn’t really like it, he didn’t want to do that. Baseball was good and squash was good.

Richard: A lot of little league.

Courtney: The first question any other little boy who he’d met with a heart condition—that’s the first question they ask him, “Can you play sports? Did you play this? Did you play that?” They all just want to be able to do what everybody else is doing.

Richard: But David has never really had any physical pain from the heart condition, it’s just, again really running out of gas and having to realize that as much as he wants to be like everybody else, whether it’s kids that are doing all of the other stuff that kids do, he was just bound and determined to be a normal kid, but he’s not. And there were always some reality checks along the way that I think have helped him to mature and grow up and to be a better person because of it.

 – Courtney and Richard, parents of David, age 23, TOF


 Pacemaker Camp

She likes having the pacemaker camp, after year two she did get teary-eyed about leaving camp. It is just two nights, but she really enjoys having that. It sounds so corny, but just to have that celebration of everything’s normal—what they have—and getting to know other people who have the same thing. And it’s interesting because I guess it’s almost like being a twin, it’s other people who have the same thing. I think she really likes having that. And that’s how we set it up with her sisters, like, this is Alexandra’s story. I think it was really nice to meet other kids her age who had it, and just have fun. And you get to see some of the doctors and nurses in a different light as they dress up and do funny things. I think it’s neat to think like, “This is something, only because I have a pacemaker that I get to do.”

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker


Doctors from the hospital help run the ICD/Pacemaker camp. She’s gone every year, and it’s the biggest thing for her—bigger than Christmas. It’s a countdown to when is she going, what’s going to happen. The first time she went, of course me and my wife were extremely nervous, extremely scared, it was the first time she had been away from us. We go and have the pizza, the party, and then the big van comes up, all the kids get on like they’re going off to camp, and then they open up the back of the bus and it’s all full of medical equipment. It made me laugh. This is crazy, that this is the way it is. She went, she came back unwashed, completely filthy, disgusting, done things that we would never let her do like rock climbing, but she was with medical professionals, and she came back and it was the best. It was the best.

Being free to do all that stuff was huge to her. But bigger than that was meeting other kids that were in the same situation as her. Kids who had had heart surgery—they all basically have ICDs or pacemakers. They have scar buddies, they call them scar buddies, and they show their scars to each other, and they’re proud of their scars. It’s not something they want to cover up. A big thing was when Chloe met a girl, she was Miss Massachusetts at one time, and she had an ICD. She had a problem with her ICD so they had to replace it, and she has quite a large scar, and she said that when she was in the beauty pageant, she didn’t cover it because she’s proud of it, it’s who she is. And she told this to Chloe, so Chloe is happy with her scar, it doesn’t affect her.

 – Jim, father of Chloe, age 13, CPVT