We're going to get started shortly. I am one of the moderators this morning, Shu Sanitani, a pediatric cardiologist and electrophysiologist in Vancouver, and delighted to be here this morning, a slightly different session than many of us are used to. I don't think there's any slides, so you can ignore the screens. We're probably not going to use that QR code to submit questions, because I don't want to, and feel free to move in. This is going to be, hopefully, an intimate conversation, so we're very privileged to have real live patients and families join us today, and I know we do that as a daily task or privilege in our jobs, but we thought it would be interesting to really be intentional in listening and learning from families this morning, and we have a couple of lovely families who have traveled here under no duress to be subjected to our questions, and hopefully some time for your questions, and I've really enjoyed meeting them this morning, and delighted to introduce my co-host. The intent, really, was to have him do the whole thing. Rob Pass is the head of cardiology at Columbia, and at Montefiore, keep going, at one of the New York programs, and the reasons for his leaving the other programs have not been disclosed, but the reason he's here is because he hosts an incredible podcast that is on every week, and is just a very sophisticated interviewer and collaborator. And I do a little EP on the side. Some EP. All right. And then at the far end is Matt Williams, who is a doctor. That's the extension. No, he's an EP here at Rady, and did his training here in Boston, and he really helped us working with these families, and is going to help us navigate this. And then I just wanted to introduce Dr. Lauren Schneider, who's here with us today, who's a professor of psychiatry and behavioral sciences at Stanford, and largely works with the electrophysiology group, providing psychological support for the large patient group there, and we're very honored to have her. We were just discussing what a rare resource to have somebody of this quality right here with us today. It's really wonderful. I'm just so excited to be part of this. Thank you for joining us. And so maybe we'll have Matt introduce our first guests of honor, and then we'll have Lauren say a couple of words as well. Sounds good. I'd just like to echo what she said. This has been a great honor and joy to help organize this. As you mentioned, I think we all try to learn from our patients and family members in our daily interactions, but we're often very limited in our time. And these are a couple of families that I've learned the most from through my career so far, and I hope that we can, as a group, learn more from their perspective. I hope that I can learn more as we chat today. Our first family is centered around Lucy. Lucy is nine years old. She's in third grade. She is really, really good at finding hiding places, even in tiny clinic rooms. So whenever you go in to see Lucy, you don't see Lucy. She's just somewhere, and you have to try to figure out. Now it's become a little bit easier now that we can check pacemakers without being so close. Sometimes we check her device without even seeing her at all. She's a master at mystery and hiding. She was diagnosed with Long QT Syndrome Type 3 just before her third birthday and had an ICD implanted at that time as well. That's all. So thank you for being here. It's really a joy. So welcome, Lucy and Lucy's parents. Oh, sorry. Yes. Rachel and Michael. Sorry. I thought I mentioned that already. Those adults. Lucy captivates our attention really effectively, so sorry about that. Rachel and Michael, her parents. And we will give the audience an opportunity to ask some questions after our questions. Maybe to start us off, Lauren, if you could just give us just a high-level overview of the value of actually listening to your patients and some of the stories they may tell. Absolutely. So I think it's been acknowledged that this is such a privilege to be here and an honor to really learn firsthand what this experience can be like. We know that everybody's story is different, but there are some commonalities and some common threads that can be true for many. And so we hope to learn what those are. And I think the busy clinic environment is, it necessitates a focus on so much of the care of the whole person, but there's a lot of demands that are present. And so I think this is really a privilege to be able to take a step back and sort of zoom out in terms of learning what are the key aspects and areas that can really have an impact on a patient and family and considerations for us to then take back and maybe incorporate into our practices. So I'm going to have the honor of jumping in, have a bit of a conversation with Lucy. We've already practiced on the mic, so I know she knows how to belt it out there. So Lucy, thanks for coming. And I think there's a unanimous approval of best outfit on the stage currently to Lucy. Lucy, why don't you just tell us a little bit about why you go see Dr. Matt? Well, I don't really know. So you just get in the car and you don't ask questions and they bring you to this strange place and you just go there without wondering why. No, I sort of do, but I sort of don't. All right, that's fair. What are some of the things that you like about going to see Dr. Matt and his team? Well, I like how I can always ask questions so I can learn about this and help myself stay safe at school. I've had a couple of incidents. Okay, well now you've really raised our curiosity. Tell us a bit about what you mean a couple of incidents. Well, my friend Maya at school was helping some of my friends learn on the monkey bars and she tried to convince me to go on them. As soon as she did that, I felt a little quiver and I sort of just jumped off of the structure and panicked. Wow, that sounds interesting and it sounds like you reacted quickly to your feelings. Is Maya a good friend? Yeah, we worked it out. I like talking to her about it now because her mother is a doctor so she sort of gets what I'm talking about. Okay, so doctor's kids are smarter than other people's kids. So now, what grade did you say you were in? Third. Third grade. And do you have other activities in school that you don't necessarily do the same as the other kids? Like monkey bars, maybe you don't go on, but are there other things that you don't do? No, not really. I just sort of look at the structure real quick before I go on it and see what's on it first. Like, these are monkey bars, like no go. Like no zip line, but zip lines that I can sort of just sit down in and hold, I can go on that, but my school doesn't have any of those. What about magnets? Those were the most incidents that I've had before. I don't know when it goes off sometimes. Sometimes I just sort of hear it and I go to the nurse for like 30 minutes just in case. Like I think one of my friends might have a magnet in their pocket and I'm not sure. Okay. And so the school nurse is helpful. You go sit in her office. The magnet's no longer there, and then you go back to your class. Yeah, it hasn't happened in a year and a half since last time I tried to sneak a piece of pumpkin pie. Okay, you're going to have to explain that a little bit, why there were magnets where the pumpkin pie was. It was in the fridge and I tried not to show anyone during Thanksgiving that I was over there, and then they flipped on the wrong side of me and it went off. Okay. And so do you tell Dr. Matt these kind of incidences and shenanigans when you go see him? No. Okay. All right. That's good. Now, do you take any medicine for your heart condition? Yes, three times a day. I now do not like pudding, even though I have it with it, because over time it just sort of adapted and now I do not like pudding at all. So your medicine is in the pudding? Yeah. Okay. What flavor? Chocolate. Okay. Do you have to take medicine while you're at school? Once. Like once every day, or? Once every day at school. Okay. I do it three times, so one of the times is over there. So how do you do that? Well, my teacher has an alarm on her phone, and when I hear the alarm, and I sort of know like after second recess to go to the nurse's office, like watch the clock till 1255, then I sort of go scutter over there. Do you ever forget? Well, once I almost did. And a while ago, a long time ago, that was before we had the system, and the nurse forgot to come and get me, and I didn't have medicine until like three, and I was supposed to have it at once, so two hours later. Did anything happen? No, nothing happened. I was just in shock that I forgot. Wow, you sound very mature and in control of your medicine. That's excellent. What are some of the other things you like to do besides go to school? I like to play chess, clay, and dance a lot. Do you take any dance classes, or swim lessons, or? Yeah, I take both, dancing and swim. And do you take swim lessons with a group? No, just one person and a teacher, just me and a teacher. Are you a good swimmer? Yeah. That's pretty good. Living around here, it seems like there's a lot of water around. Do your friends know that you have a heart condition? Maya is the only one, Maya is the only one. I don't trust it with any other one of my friends, no. And then your teacher and your nurse? Yep, and the whole office. Okay, so lots of support networks in place. So I was just going to ask my fellow panelists if they have any questions for Lucy, who's very capable of answering these questions. I think a question that might be helpful is, what would you like to see doctors and nurse practitioners and other people who are on your care team, how could they make visits better when you go to see them to check on your heart? I don't know. It's always so nice, and I just feel welcomed a lot. That's really amazing to hear. Sounds like remembering to create a welcoming environment, maybe have a little bit of fun. Do you play hide and seek, is that what Dr. Matt was referring to? Well, I do have this habit, like every time I go into a doctor's office, while I'm waiting, my parents have their phones in their hands, and I just go and hide behind a cabinet or under the bed, and I'm just like, don't, don't, don't look at me, don't look at me. I think that's a good reminder to try to have some fun. Can I ask a question, Lucy? One of the things that I love most about visits with you is that you do ask really, really good questions, particularly for your age. You're a great thinker, and you think a lot about all sorts of things. How do you come up with those questions? Is it something you talk with your mom and dad about beforehand? Is it stuff that you just kind of wonder about? I just think of it at the time, because when I'm in the doctor's office, I think about it most, so I'm just like, how does this work, and I ask the question. Do you ever have questions when you're not at the office, you're just, you know, hanging out at home or at school, and something comes up? No, not really. Lucy, it seems to me like you know more about your heart than patients who are a lot older, even. What do you think is the best way you've learned? How have you learned the most? Is it Dr. Williams? Is it your parents? Do you think it's just the questions that you ask when you see Dr. Williams? I think it's just because I have a very particular mind about knowing this stuff to keep my body safe from things that might harm this condition. So I sort of just have a routine going on, and so I sort of just started thinking about it so that I can keep myself safe. Wow. I think Dr. Williams selected the ideal patient who has accountability and responsibility and loves his institution. One of many. One of many. I have a suspicion, Lucy, that you're actually 18. Are you sure that Dr. Williams is not lying to us today? Yes, I am only nine. It says on my birth certificate that I was born in 2016, nine years ago. Okay, I guess we'll have to accept that answer. Do you ever ask your mom and dad questions about things? Sometimes. Just like rarely, though. I don't really do anything like that. Do you ever feel nervous about anything? Some of these things have happened at school. What do you do to try to talk with your mom or dad or people at school? I sort of just go home and run in my room and then start cuddling with my stuffies and talking to them. And like I have here today, a squishy, I usually use it for my stress when I sort of have something on my mind and sometimes just for fun. Lucy, do you think that you have taught your parents a lot about your heart condition? I don't know. You might have to ask them that. Mom, dad, what sort of things have you learned by having a very articulate and bright child with a heart condition? As you can imagine, Lucy teaches us stuff daily. She was diagnosed around two and she's nine now, so the way we've had to communicate with her has changed radically over that amount of time, too. When she was first home from the hospital and things, she would say, like, why do I have this line? And we would have to tell her, because you are so brave, because she had just had surgery to insert her ICD. And that was a good answer for her. And as she grew older and had more surgeries and things, those conversations became more developed and more nuanced. The questions she asks always teach us more about what we need to tell her and where she is in her journey with all of this. Her question asking has probably helped us navigate her education and her heart stuff more than anything, really, is her level of curiosity. I wonder if our audience has any questions they want to ask of Lucy. This isn't really about her medical management, but I feel like she could definitely teach us some things that we could do at our programs. If you could just make your way over to the mic to do so. We're not going to keep Lucy here for the whole hour and a half, much to everyone's chagrin. We do have some other folks that we're going to ask questions of. So we're going to, Dr. Pass is going to ask mom and dad lots of questions and we'll come back to you. Hi Lucy. Thanks for telling us more about your story and answering all those questions. My question is how did you decide to tell Maya about your heart condition and do you remember what you told her and why don't you feel like the other friends don't need to know? Well, I was, she always goes like rough house on everyone and when she started not going rough house on me, I was like maybe she's like learning more and maybe she knows a little more about what I'm going through now and then I sort of just started talking to her about it and she started understanding. And I don't remember what I said to her or how I told her, I just remember that she answered back, act like if you ever need someone to talk to, I'm open. And why do you tell Maya and not your other friends? Well, I sort of just tell her because I feel most comfortable with her at school. Yeah, it sounds like you could kind of tell that she was ready to hear your information and you were ready to tell her. I'm so glad you have a friend like Maya. Yeah. It was a good time to finally have a friend who understand it. Another question from the audience? I just have a comment. Lucy, I was a school nurse before coming into electrophysiology and so I think it's really important that every year when you go back to school that you let the nurse know because I know sometimes every year it could be a different nurse, but you let them know about you and how to take care of you and having open communication from your doctor, your cardiologist doctor to the staff at the school is really important because where I worked, it was difficult with the communication and I felt very alone as a school nurse and I felt like I couldn't give good care to the students and that's one reason that I left the school is because I didn't feel safe taking care of the students. So I just want to say thank you for coming today and sharing your story with us and stay strong and keep inspiring those of us that work with hearts and with patience and I think you're going to do great things. Thank you. Thanks for that perspective. That's a good lesson for us all. Hi Lucy. Thank you for coming today and sharing your story. I have a question about whether you know other kids that have heart conditions. Any heart conditions at all or similar heart conditions to you and whether you know any other kids that have devices like yours and whether that's been helpful or not. Well, the only place I usually see them is at Stanford once a year, so I just like to take time and really ask them questions to learn about my future and what could it be and it feels really nice to know some older kids who had go, went through that to help me through my next stage in life. And you said you do that once a year, would that be helpful to do it more often or is once a year good? It would be great if they did more than once, but I know we can only do it once a year. We'll see what we can do. Hi Lucy. Good morning. I want to also thank you for sharing with us this morning. I was just wondering if you have any ideas about what you want to be when you grow up. Well, I really want to be a singer as big as Taylor Swift, but I know that that is not a full time job. So I'm thinking about being a dance instructor or a marine biologist. That sounds fantastic. And if none of those work out, would you think about a career in medicine? Never. Thank you so much. I think we just figured out how brilliant this young lady is. I just wanted to make a comment about the school nurse situation. There's this wonderful podcast called Petey Heart and just this week we review a paper on personalized emergency action plans that was based on a paper written by Dr. Belinda Gray and Dr. Rachel Lampert. And I would encourage those of you, it just came out, the article, it's actually an opinion that's in circulation this month. And it really goes through how to come up with a plan that results in communication between patient, patient families, and people, all the people involved. It's one thing to come up with a plan between the doctor and the patient family, but I think we critically need to involve all of the people who are involved in these decisions, particularly when we talk about returning to play and we speak about shared decision making. Shared decision making is between the patient, the family, and the physician, but it is also with the school nurse, with the coaches, with the teachers, all of these individuals need to be involved. And I think it's a very nice, very brief summary with a nice example, actually, they emergency action plan that would hopefully avoid situations as the one you described where the school nurse was left in the dark. Just in our remaining couple of minutes with Lucy, I want to ask the audience a question and if you would like to be honest with your answer, that would be great. I'm curious how many of you, when you initially are seeing Lucy in clinic, perhaps checking her device or just doing your history and physical, how many of you are focusing your initial conversations primarily at Lucy and how many of you are focused, well, why don't you show of hands, your first interrogation is mostly towards Lucy, hands up for those of you who do that. So most of you are a good percentage of you. And how many of you start initially with your conversation at the parents level? There's no shame in that, they're important as well. There is some shame. There's some abstention. Great. I know Dr. Pass has some questions for mom and dad here about their journey. But why don't we first, there's an audience question. Sorry, I got one more question for Lucy. If you were going to get to talk to other kids with devices or similar diagnosis to you, do you think it's more helpful to do it via like Zoom virtually or would you like to see these people in person more often? Well, I usually like, because Zoom calls are very short, they're like two or ten minutes long usually. In person, it takes like 20 or 30 minutes to finish a chat, so it would be nice to see more kids in person with clothes or exact conditions like mine. Yeah, that's a great point. Thanks. I can just share, Lucy acknowledged our patient and family day that we call connecting. We'll be doing our 10th event this summer and we set it up a few years ago to create a space to allow patients with ICDs, babies up until those who are in their early 30s a chance to connect and get to know one another. I think Lucy spontaneously shared one of the most beautiful things of the event is the way that older patients can mentor and share their journey with those that are younger. And you'll now do that with those that are even younger than you, with those that are maybe four or five years old and they really can form quite a bond even though it's a one day event. And so we're really happy to be able to offer that and learn firsthand how valuable it can be. I want to ask Rachel and Michael, as parents of Lucy, what resources did you guys use and would you suggest to learn about things like long QT syndrome and defibrillators? I know Dr. Sreznak and the team at Stanford obviously were your first educators, but how did you take that initial information and then make yourselves expert? Yeah, I would say we always start with our medical team. That was always our first place for questions. And then as you're conversing with people, you get these little nuggets. I remember Lucy was down for surgery for her first ICD placement and Deb at Stanford came into the room and she's like, by the way, there's this thing, it's called credible meds, put it on your phone. I'm like, I'm swirling, but okay, I got my phone, I put that up. And then a month or so later, I pick up my phone and look at what this is and take a deeper dive. And he says there's this organization called SADS. By the way, worst name ever. And I love them. But he says there's this organization, you should check them out. So these are places that we go pretty regularly for information. And then I would say that there's a lot of it that becomes just you have to discover on your own. What do you do? How do you get your medication to a Weird Al concert that you're taking your kid to? That's pretty common in our house. But you've got this liquid medication that has to stay cold. So you're constantly researching weird things that don't necessarily fit the bucket. There's this thing that's made specifically for diabetes medication, but it's not for you. So it's just constantly trying to find things that fit your weird situation. So it's conversations. It's a lot of online. It's a lot of community groups. Reaching out to just our network of folks that we've tried to establish. Yeah, I mean, it would be nice if there was just one simple answer to say, oh, we learned it all from this resource. But there isn't one resource. So it's just a process of constantly trying to collect all those little bits of information to help us through the process. Yeah. Interesting. And at this point, I think Lucy's actually required to speak at one of the other sessions. So she and I are going to step out. Lucy, come on. Lucy, thank you very much. Let's go ahead, Rachel, please stay on the stage, maybe scoot over one chair, and then we'll invite the Mitchell family up and continue discussion with them, and then also get more of Rachel's perspective as well. So this is the Mitchell family. We have, we'll see what order they sit in. I'll scoot over a little bit. We have Cadence, Chance, and their mother, Melissa. Just a very, very brief medical overview. They have a familial NKX 2.5 variant, and each have had concerns with that. So Melissa and Chance have had ASDs that were closed and have cardiac conduction issues, have pacemakers. Cadence has hypoplastic left heart syndrome and also has a pacemaker for sinus node dysfunction and for intermittent AV block. They're lovely people. They have taught me so much. They have very, within one family, they're very- Lucky. Yes. Genetically lucky. Like, within one family, there's a lot of diversity of perspective. So I think it's gonna be really interesting to explore, even with some similarities, obviously, being related, even, you know, they each have their own perspective that I hope will be really helpful and valuable for us to hear. Thank you. I wonder if I could just start by asking Melissa, how did you find out that, I guess, Chance, because he's the older son, older child, how did you find out that he had an ASD, that he had heart block? Was this something you were aware of because of your own personal history, or how did that diagnosis get made? It was very scary, actually. Yes, I was born with a hole in my heart and I had open heart surgery when I was five and had no issues at all until my husband and I went to get married and literally asked, you know, when we were thinking of kids, asked doctors, we did genetic testing, everything was normal, and so when I had Chance, he had no issues. He was born early, but no heart issues. And I think about six months old was the first time he stopped breathing, no pulse, no breathing, and needed CPR. And it happened again three more times. And by the time he was two years old, we were at, he was at daycare, and at a nanny, like a nanny's house, and he was running around and he collapsed and he had no pulse and he was not breathing. And Life Flight came in and tried to revive him with CPR and took him down to Rady's. And we were in the emergency room and he was diagnosed with breath-holding spells. So, you know, we just thought that was kind of interesting, but then there was, in the emergency room, there was a cardiologist who was looking at the middle, you know, at the nurse's station, and he said, this child in this room has an arrhythmia. And I just knew at that point, because of my heart history, that it was something we were gonna have to figure out. But he did have, he did technically die and be brought back to life with CPR four times before we were diagnosed with the heart problem. Wow, that's very dramatic and scary sounding to me. Yeah. How did you deal with the anxiety and the fear associated with that? I mean, that's pretty traumatic, I would think. Yes, it was traumatic. But, you know, and how I kind of raised them was, it is what it is. As ridiculous as that sounds, it kind of lessened my anxiety and stress and fear because it is what it is. I mean, the only thing we can do was move forward and be proactive and reactive and ask questions and learn and treat and do all that. So that, just that one little statement, my husband and I say to each other to this day, it is what it is because we can't control a lot of that information that was coming to us or a lot of the things that were happening to us physically and, you know, medically. So that was a very big turning point was learning to accept that this is our reality and how we move forward from there. So Dr. Schneider supports families in this space. And I wonder if you could just give us and our audience some of your insights into, you know, are we good at involving psychological supports? Do we, you know, families that have experienced, you know, their child getting CPR, what are some tips? Because not everyone has access to a cardiac psychologist. So, you know, when should we refer? What are the steps? Sure, I think one thing to consider is that we're far behind some of our other disciplines. So I think pediatric oncology has really given us a lot of inspiration to move in that direction. Excuse me. Of having more embedded mental health supports. And I think we hope to be at a place where in pediatric cardiology, we do have psychologists and other mental health clinicians working alongside our cardiologists and other APP, RN and other providers. In lieu of that, since we are not yet at that ideal stage of care, I think it's really important to acknowledge that for every family it can be different and for every patient. So for some, diagnosis is a time of true survival. They can't stop and process what has happened to them or their children. It's not helpful at that time to do so, and they really just need to focus on getting through each day. For others, diagnosis can be incredibly traumatic and overwhelming, and they really need the support that's been done in there. I think as providers working in the frontline or what's considered the medical home, opening up the conversation to ask how are you doing, either at diagnosis or along the way, and continuing that, keeping that door open is incredibly powerful. I think many pediatricians, cardiologists, other providers can feel uncomfortable to ask how somebody's doing because they don't know what to do or they don't have the support or the resources should someone disclose that they are struggling. In a review of some of the literature out there and some videos, parents just acknowledge being asked for some is helpful. We know for others, upwards of 50% of parents of children with ICDs have significant PTSD symptoms. And so they really might need true psychological intervention and support and connecting them to a provider if you have a social worker in clinic or at the very least asking them to have this conversation with their PCP or calling their insurance company to find an in-network provider. There's a few strategies one could implement should a parent really be struggling with mental health concerns that need that intervention. I think in absence of that, everyone benefits from a provider opening the conversation and spending a few moments to ask how they're doing. And I can happily discuss later or providers are able to connect with me after the fact. There's some really valuable resources to equip frontline providers, meaning pediatricians, cardiologists, et cetera, with some tools and resources to initiate that conversation with simply the question of how are you doing? Very interesting. And you know what, can I just add to that, if you don't mind, making the process easier as well. Because when you're in the throes of, you know, I had, I was getting CPR, he was getting CPR, she was getting CPR, and we definitely needed that support. But sometimes when you get, oh, here, check your insurance, who's your psychologist, you know, and then try to make an appointment and getting from A to B was very difficult when you're just trying to keep your kid alive during the day. So I think that's one aspect to look at is not just having the conversation, but how can the, you know, we get the balls in the air for it actually to happen, if that makes sense. Yeah, and there's a really incredible article by Adrian Kovacs from 2022. It's an AHA consensus paper that very strongly advocates for psychologists and other mental health providers to be embedded within the medical clinic and the visit to provide that access. I think it helps to not only create easy access at a time of incredible overwhelm, it also de-stigmatizes mental health challenges. And beyond mental health challenges, I think we can all acknowledge that this is incredibly emotional and overwhelming for patients, families, and their caregivers. And so to hopefully move in that direction as a field would be really the ideal. Can I ask for a show of hands, how many people have an embedded mental health provider in their cardiology clinic on a daily basis or regular basis? So we do not, we have resources that we use, but yeah, I mean, clearly there is a huge need for this. Well, for the field to catch up with the state of the art and standard of care that really is necessary. Actually, I had a question for Dr. Schneider. What would you say for the majority of us who don't have an embedded person, could you give us a few tips on how to engage maybe outside psychiatric or psychological assistance for our patients? Sure, that's an excellent question because I know it, I just want to acknowledge that it is incredibly daunting. You acknowledged how incredibly difficult it can be as the patient or caregiver, but also I think for the provider. There are some trusted resources from American Psychological Association, Psychology Today, et cetera. I recognize that that's one more step one would have to do to go on that to find somebody who is close to them in the area and then it would be up to the patient or parent to find somebody who's in network. I think validating that this could be a challenging process. Don't give up. Please continue to reach out for help or support from a social worker, from a community agency. I think there's the version of support that exists in terms of psychological and psychiatric intervention and then there's also versions of support that exist amongst parent and patient groups and networks that can also really, I think, help one as they're navigating this complicated journey. For pediatric patients, I think turning to the PCP who is often well-connected with some mental health supports in that child's local area. Also, hopefully many schools have some version of a school counselor to tap into for some emotional support for that child and so it's trying to think through what might exist in the local community and most counties offer some form of mental health support and so at the very least, encouraging a family, even though it is one more step, to try to make that call and I think validating, we know you're overwhelmed and this is one more step but there can be tremendous benefit, especially for the parent if they need to take care of themselves to best take care of their child. We really want to support them in doing so. I wish I had a perfect solution and a really easy one, two, three step process. One of the reasons that I asked you that question, aside from the fact that most of the people in this room, myself included, don't have an embedded person is that you work in a very, very large center that I'm sure has a huge catchment area for referrals so you probably deal with this problem all the time because you can't personally provide the services to all of the patients who might need them within the clinic there. I think at this point, we're gonna ask Chance a few questions. I'm gonna let just, yeah. Just a comment and just to amplify what we've heard and oncology is much ahead of us, I think. I've had some family members go through it and they do make it a lot easier. I think we in cardiology, we say download this app and link on this and check your provider and all that stuff so we have some work to do for sure. So Chance, I understand that you were actually named Johnny when you were first born but then you had CPR so many times they said, you know, we're gonna change your name to Chance. But tell me a bit about what it's like or tell us a bit what it's like to hear this story about your beginnings, getting CPR and lifelifted and stuff. Do you talk about that at all or? I do. I somewhat brag about it, actually. Yeah, just because no one else has ever gone through that and stuff and I think it's kind of pretty cool just because I've made it through all that and I'm still here and from both my parents and stuff, they've given me a lot of care and stuff throughout the CPR and all that. Oh gosh, I'm trying to put that. But in the simplest terms, I brag about it quite a bit just because, you know, it's part of me and I'm, yeah, it's part of me. That's about the best I can do, yeah. How old were you when you had your first surgery? Do you remember? Two, two, okay. I was gonna say four. No, four, sorry, four. Four? Two when you were diagnosed, four years old was when he had open, four years old was when he had open heart. We went in for an ablation to try to close the hole in his heart and he came out super fast, you know, and my husband said, oh, they're done. It must be really good and I said, no, that's too fast. That's bad. So he had to have open heart at four and he had his first device placed at four. Chance, do you have any recollection of that? No, I, no, not at all. I see. And on a day-to-day basis, you have a pacemaker. Your ASD is closed. Yeah. What would you say is the manner in which your heart issues affect your life most commonly that maybe we as providers are not thinking about or as aware of? Here we go. I think, I don't think my life, like day-to-day life has been very affected by it as much as these two. So I think I was really lucky for us three. For the kind of most affected moments of my life are probably airports, dealing with the metal detectors and scanners and stuff, you know, I get to go around the big lines and everything. But then not being able to play contact sports in high school, I probably would have, you know, tried for football or basketball and stuff, but I was told no. So I ended up playing golf, which I'm grateful for now. And then some field trips when I was younger, I couldn't do some of the larger magnetic rooms and stuff. When I was like in third grade, we went to a museum and there was a giant magnet room. Everyone went in, I had to sit outside. So that's about the extent that it affects my day-to-day life. Maybe some athletic activities as well. When I want to go for like a run or a workout and stuff, sometimes I'm getting a little tired faster than others, but I guess that's just the way I have to work harder. Sounds like you need to make Dr. Williams work a little harder. Just kidding there, man. It's helpful to hear feedback, isn't it? Yeah, but I think I've been really lucky just because it hasn't affected me as much as some other people or as much as some people said it would. Well, you have a little sister sitting to your right who had seemed like she had a lot to say to the family. Cadence, so what do you think we're not, what are we not understanding about how your heart problems affect your life on a daily basis? What are we missing? Um, I don't think like, especially when you're in school and you're in sixth grade and you know, you want to go to PE and you want to be cool, but you can't go to PE because you can't do sit-ups and you can't do push-ups. You can't do certain things that the other kids can do. So you're like, yes, run the mile. I have had such a hard time running the mile. I think I had my mom run it with me and it took me like 25 minutes to run one mile. And I thought I was weird because I, you know, I didn't fit in. So I think that was definitely hard for me to process and when I was younger, for sure. And you know, it's an interesting question, but you have a congenital heart problem, very serious one, which thankfully you've done great from, and you have a pacemaker. I've asked a lot of patients in similar situations, which of those two things do you think is a bigger impact on your life? The fact that you have hypoplastic left heart syndrome and have had open heart surgeries or the fact that you're a pacemaker patient? Really? I was gonna say a pacemaker just because of like the activities that I've been kind of with, like I'm a very active, wild person with every, like if I could go skydiving, I would, but I can't. This child. I took golf, she took everything else. He took the cum sport, but yeah, probably pacemaker. I think that's a really important point to make because, and I've heard this from many patients over the years, you know, we as cardiologists, I think naturally would imagine that the hypoplastic left heart syndrome because you had at least three open heart surgeries and all, and yet it's just, it's very reproducible in my experience that the pacemaker ends up being a bigger deal for patients than the actual congenital heart problem. I think that's something that certainly took a while for me to figure that out, and I appreciate you sharing that with us. So a question for both of you. I wanted to call you kids, but you're young adults. So have either of you accessed support of psychologists or counselors or had any issues? Maybe answer separately. I haven't, and I have not even thought of it either just because I don't think this has affected me that much. I'm usually a very, very happy person from day to day. I'm grateful to be living life every single day. And I, you know, I take that as a blessing pretty much. You're not happy to me. Okay, so when I was growing up, I had a really hard time making friends and I was bullied a lot. I was called robot because I had a little metal device. Okay, that was kind of cool, but like after a while I got sick of it. And I definitely think that is where like, you know, psychology and therapy comes in with, you know, because it's hard. A lot of kids my age growing up with these issues have PTSD and they get bullied because, you know, they think something's wrong with them or maybe they're not cool enough to do certain things or, you know, I can't drink, I can't smoke. And that's what kids do these days. They go to parties and they drink and they smoke. And if I don't do that, I'm not cool. So, you know, you don't really fit into like a group really. So you kind of feel odd. And I feel like it's definitely something to think about to have somebody to talk to because you, you know, you don't want to tell your parents, like I don't have any friends at school. Like that's not something you want to say. So I definitely think somebody to talk to would be a smart idea for sure. So how did you practically navigate that? How did you get yourself psychological help? Did you ask your mom? Did your mom suggest it to you? How did that practically work? Do you remember? Yeah, I ended up telling my best friend and my best friend told my mom. Not really happy about it with her, but it's okay. It's great. I ended up getting the help that I needed, but I ended up telling my friend, yeah. So. Do you mind if I jump in on this? Sorry. These kids like Lucy and like Cadence and Chance, they grow up in the hospital socializing with adults. And it really is, it does change them. I mean, you could see how articulate Lucy is, you know, is, and these kids would come to school and she wouldn't know her ABCs, but she could say, oh, I had my left ventricle taken care of. And then I had an ablation and what happened was I had, you know, they just grow up a little bit different and making friends was very difficult for her. Not even a problem for Mr. Unphased guy here. Like you, he, there's times when I have to remind him he has a heart issue. So we had very different dynamics happening and she did do some therapy. We did play therapy. We took advantage every time when we were in the hospital of the social workers, the dogs coming in, the music being played at the hospital, the art program that was there, everything at the hospital that we could take advantage of, we did. Animals became a very big therapeutic help for her. And in fact, her zoo at home is crazy, but you know, a service dog and animals. And she did, we did talk a lot and she did tell me a lot. And I know that there's a dynamic with her friend that was different from her dynamic with me, but it's challenging. It's very, very challenging for these kids. Even the, you know, he's so unphased that, you know, he went to a therapy appointment once and had nothing to talk about except for cool things that he saw on TV. I don't think NASA stuff is cool, but sure. But yeah, so it's been a challenge. I mean, she also was very small, very underweight, very tiny and took nine years of self-injected growth hormone shots because we taught her body autonomy, which is another, I'm sure, topic for you. And she was behind physically, you know, she had kids who were 12 years old who were like five something and developed. and you know she was like you know and so socially you know boys weren't we that whole thing wasn't happening and different friend groups weren't happening so it was it was it was difficult and you had to figure it out so I just asked each each of you as mothers and I'm interested to hear your perspective obviously different journeys with very different individuals how have how have you been able to to sort of parent in a confident and calm manner while having your inner turmoil if you if you could indulge us well you know like that how you talk about a duck looks calm on top and the legs are constantly like this I think that is definitely my parenting journey I would say that just we always prioritize Lucy and I can be calm when it's external things for her and I know what to do and we've got to take medicine we've got to do all of these practical things and that's up sits up my life in a very regimented way I can jump through all of these hoops throughout the day that's totally fine the moments that hit hard are things like when you know a kid tries to put a magnet on her at school because he hears she's got this box that can make these noises things like that when those are the moments where you you fall apart but the practicality of parenting this kid I mean you parent the individual you're not parenting the condition and I think we've done a really good job with Lucy of trying to make sure she doesn't define herself as someone with a condition and as she calls it her box that you know she is this kid and then but I think sometimes that's to a detriment because when she does realize that she's different when she does realize there's something she can't do when you know something happens externally that she starts to reflect on how that impacts her life there was a child at school that died of an undiagnosed arrhythmia that happened to be her book buddy the school said oh we talked to her about it okay first of all you you cannot just talk to her about that that's not a like a simple like hey it's cool your book buddy's gone go get a new book buddy like you can't like for a first grader that's a that's a bigger conversation especially a kid that all of a sudden starts internalizing that oh kids with heart conditions this can happen to kids with heart conditions I'm a kid with a heart condition oh my goodness so that's when we start to you know also then you rely back on okay what practical steps can I take and that'll help me in parenting her so we happen to find a pamphlet at dr. Williams offices Ollie Hinkle foundation and they referred us to you know seven visits worth of therapists with therapy with someone who could help her navigate those conversations but I think for me trying being calm is about finding the practical things I can do to help her in those moments and to just make sure that her life is as normal as possible and and and it's a very difficult balance to balance normal and not normal and what the definition of normal and not normal is and I used to tell the kids when they were young you're not normal but you're normal for you and that's the only normal you know so you're normal and and it kind of made sense because as you said you that's where a big struggle is is you know trying to put your kid out there in the world and have them just live a normal life they're absolutely not normal I mean these you know these these are kids that that have real life and death issues every single day and yet have to balance like you know and how do we send her off in the world she she brought climb she skateboard she surfs she has a horse she I don't even know she does archery she does golf she does everything she everything and not the safe things either you know so how do but yet she can't you know she has to have oxygen when she flies that's weird that's not normal and it's hard and she you know try going through the psychological and the insurance hassle of that for a kid you know so the balance of making them normal when they're not I think it's difficult thank you for sharing that you know I wanted to since we have two young adults now up here in chance and Kate and I wanted to ask we talked very very briefly before the session about the concept of transitioning to the adult congenital world can you share with us how that journey has been for each of you and what what did you like about it and what have you not liked about it and how can we do that make that process work better so we had two very very different transitions mine was pretty easy simple no problems that I know of at least it it went through simple I haven't had any problems with the new place but then again I wasn't I don't think I was paying that much attention to the last kids yeah but now you know I'm kind of getting ready to go off in the world and stuff so I'm trying to learn everything about myself my heart condition because I didn't really know that much up until probably like 18 19 and chance who is who's how are you learning that actually how are you is it is your mom is it the doctor new doctors you're working with so it's mainly my mom she knows everything for that stuff so the last like couple of years I was asking her questions like how to answer some specific things and probably like the last year I've been able to kind of go myself and you know answer any of the questions that doctors had and stuff I'm paying attention to them now and I'm asking I'm asking questions I'm asking questions about my own condition and I'm trying to actually learn about it okay seems like your sis has a little bit to okay not that much um I was the opposite it was a very very hard transition transition and I'm actually gonna have my mom as well say some stuff about this because she can probably explain it a little better but it was very hard when you're a kid and you're at Rady children's and there's painting on paintings on the walls and there's nice like art and it's all friendly and when the doctor come in comes in they're like hi sweetie how are you like are you doing good and then you go to an adult clinic and they're like hi this is what we're doing today all right okay have a good one that's it so it's definitely a different transition seeing familiar faces your whole life when you grow up in a hospital and then transitioning over to a new place and you know nobody it's stressful it can get really nerve-wracking for I wasn't a kid but I was kind of a kid so mentally it's hard so I definitely think that is something that can be considered we have been and I'm assuming you're the same way because I could see in Lucy we've been open and very honest with them on their conditions since day one there was never a time when we bait and switched when we told a lie when we covered something up it was very we were very open and honest now we did it in levels you know you don't tell a three-year-old oh you were given a five percent chance to live and I sure hope you make it you know we didn't do that but but her stages as you guys were talking about your stage of information sharing kind of develops as you go on he knew everything we discussed everything with him but he was kind of like oh cool okay cool cool cool you know and so that's fine that's how he had that's that was that worked for him she required a little bit more information more in-depth information and yeah you know so we had to teach her a little bit more and her situation was at the time much more dire but when we transitioned from Children's Hospital to Adult Hospital he again walked into the room was like hey what's up okay cool he asked the questions and I said you really have to know this stuff because I'm not going to be around and when you move to a different state or when you you know get a job somewhere these are all you and so he you know he had to learn a lot of stuff but her since she also had been managing her own medication since five years old her own growth hormone shots since you know five years old but her body autonomy was something that she took very seriously and learning about her issues was something she took very seriously and going from a hospital that had as she said paintings and murals and dogs that come in and art programs and music at night and you know highs that kind of stuff and and going down to the cafeteria where you can order something or order off a menu and little things like that playgrounds you know play places rest areas calming rooms things like that to a more adult geared hospital was traumatic it was a big big change and it was kind of like I hate this place I want to go back to Rady and you know we had to we had to manage that and figure out how to make it work I couldn't necessarily bring her to the playground and make the stress go away so that was a very big change um yeah I was really really scary um and they also use really big language and adult stuff there that was yeah you have cirrhosis of your liver and for most people that's deadly within so many years or whatever you know and at children's they just don't say stuff like that like they're not that's very here you go and not that we hid anything at all but I would never you know go up to an 18 year old girl who's looking at the rest of her life and say you have cirrhosis of your liver and this is how bad it is it's you know can we be a little different on how we do that so that transition period um was difficult so Lauren maybe you can give us some of your professional views because this is obviously one of the major life transitions and what are some you know some skills and some things that we should be encouraging at the pediatric side to to make this a successful launch absolutely so the American Academy of Pediatrics recommends starting the process at the age of 12 and I think introducing this concept to to patients and families is really important that doesn't mean we're asking a 12 year old to assume full responsibility or independence in their care but just initiating that conversation and returning to it so that just as has been acknowledged with other aspects of care it's an open door it's continuing with each visit with each milestone in life there's self-management skills that are a really important aspect of transitioning for the medical clinic visit so that might be taking medications calling in for refills being able to conduct a visit independently or provide one's medical history then there's also the decision-making which can be equally important in terms of who's going to make decisions once somebody turns legal age we recently had a patient who approached one of the fellows and said I don't want to talk about this I don't want to be independent I don't want to participate in this upon further conversation her misperception was that by talking about independence and transitioning it meant that she'd have to start doing visits independently and that it would sort of separate her from her mom and that it's not at all the case we were able to clarify that that misperception and and help her see that this is something that she'll decide who's going to be a part of her visits and what support she wants now and farther down the road when she's in adult care as well there's some really helpful resources got transition org and I heart I think it's I heart calm that's specific for patients in the cardiology realm that offer tips and strategies for clinicians there's also a transition readiness assessment questionnaire that is developed for patients of all types of medical conditions that breaks it down in terms of independence and visits and communicating with providers managing aspects of their care as such as refills or insurance and whatnot and those are helpful to give us sometimes a starting point but it's really encouraged to continue with each visit and supporting them setting goals and helping them out and it's so different with cardiology as well because our stuff's never going away like it's never going away and for the rest of our lives we will have regular hospital visits regular doctor visits medication every day she takes medication every day and I take medication every day and it just won't ever go away so the more we can learn to manage it appropriately the better it will be I'm curious for our audience because many of us look after patients who have primarily pacemakers without structural heart disease or the complexities of a Fontan so in your patients with just a just a pacemaker quotes just a pacemaker are you transitioning them to a clinician or to a device clinic so maybe a show of hands just a device clinic so not necessarily a physician or you have to transition to a physician okay so usually there is then a doctor that you're handing over to as opposed to you will now be followed in the adult device clinic okay well I you know this is a rare opportunity to speak with such eloquent patients and families I'm wondering if each of you might be able to you know this is a rare opportunity there's a lot of things we do well a lot of things we don't do so well what would you say would be one main recommendation what's something what's one way in which we could improve how we care for you as patients with arrhythmia conditions devices why don't we start with Lucy's mom I would say that our in clinic visits our medication management all of those things are wonderful that is all beautifully managed and I have every confidence when we go into that room that we are going to get the care we need and we're going to get it explained to us in a way that makes sense and then we have a good relationship with our care team the things that are difficult are the things outside of that room when you have to write up 504 an IEP plan when your compounding pharmacy decides that there's a new law and they can't give you more than 30 days anymore what do you do those things that happen you know negotiating with your school nurse about how this is going to work and what those things are those are the areas I think where we struggle the most because there's not a template for any of it I remember when Lucy was starting school and we needed to write her IEP in 504 there was no language there's nothing dr. Williams was wonderful and going back and forth of me and helping me craft this thing but there was no like I've had a patient before who has this here's a template for this here's language for this here's how you talk to a school nurse here's how you talk to a child's friends mom when they're gonna ask if they can go to the park with them those are the sorts of things I think where we need more help and tools and templates and things that's that's what I would say it's great advice and for me all the periphery that that that you were discussing you know I I don't I can't even touch on the financials because we'll be here for five hours but the periphery is it is an issue that I'm not sure how it can be helped from your stamp from your standpoint but um just recognizing the fact that it's it's a life-threatening thing that we live with every single day 24 hours a day so unless you understand that like literally you know my heart rate was been messing around the last few days and my doctor sent me a message saying you're gonna have to have this medical MRI and there's all these things you know you might there's death that comes from it and I like all these crazy things and then to have your kids be going through that and knowing just recognizing that this is a very scary life-threatening thing that we have to push in our pocket every day just to manage life because we want to just live our lives you know I want to go to the grocery store I want to whatever do Easter I want to go you know pick up eggs or something like that but we're always living always it's never law it's lost on him because he's not faced but it's never not present in our lives and so understanding that point and And, you know, when a doctor says, oh, you don't feel that, you know. So that's another little pet peeve I have. But just recognizing, if you can, that we are sitting there trying to manage this life-threatening thing that's 24 hours a day with us, and that would be helpful. Let's see. I think that when kids transition over to an adult clinic, I do think that the transition that you guys make could be a little softer with how you explain things in the nicest way possible. Just because you guys come on really rough, and when it comes from a kid standpoint, and you're saying one thing of this is what you have, you're going to be okay, and then going to a full 180 of you have liver disease, and, you know, usually people with liver disease die. Like that's just like a little bit of a softer, maybe meet-in-the-middle transition would be a lot nicer. Those are all very good points, many of which I'm sure many of us have not thought of. I think with this point we're going to open it up to the audience if anyone has any questions they'd like to ask our panelists today. Hi, everybody. Thanks so much for being here with us today. My name is Sarah. I'm a genetic counselor. There's several of us here in the room today. I think we're super cool, and I know that you're technically adults now, but maybe you haven't chosen your career yet, so consider it. From your mouth to God's ears. I wanted to ask you two, Chance and Cadence, how you, if you have thought about, and if you have a sense of whether you would want to become parents or not, given what you've been through and what you've seen your parent go through, if that's something that you've thought about. Yes, but adoption. I don't want to pass on the genes, because I don't want them to suffer. Not suffer, but kind of go through what we did. I don't want kids physically. I cannot have kids, but I don't, again, if I were to have kids, I would want to adopt. One, environmental reasons, and then two, I, again, don't want to put my kids through what we went through, just genetically as well. I'm not your genetic counselor, but I would suggest that you have a quick conversation with one before you officially make decisions about that, but also, obviously, adoption is an excellent way to become a parent. We actually have done genetic testing, and we, it's one of the ways we found out about, it was a doctor at Rady that discovered our genetic defect, and we've had a lot of workups done, and we've donated DNA to more genetic testing and all kinds of things, so people could understand it, and this was something that I think they have thought about their entire lives, because it's been, the genetic predisposition is so strong that they've had medical professionals say, you definitely will, this is 100% something you will pass on, and so they've both decided that, barring any kind of medical intervention, which we know, you know, there are things you can do with sperm and egg now, you know, but I think they've decided that, just based on what we've learned from doctors. Should I talk about the 100% thing? No, I think we'll, we'll leave, we'll leave their care to their team. Yes, exactly. Thank you. Thanks, guys. Thank you. That's a hint at things to come, I think. Hey, my name is Sally, and I'm on the adult side for adult congenital care in the device clinic, and we have worked a lot at Emory with trying to figure out how to make it an easier transition in the device clinic. We thought about having, like, a passport. What would make the transition to an adult device clinic easier, in your mind? Is there, are there some hints I could take back? I heard about the language, like, try to make it understandable. When you're in the kids' clinic and stuff, the language part, you're not fully understanding what your problems are. They do, once you get to the adult clinic, they start throwing all the language at you. You may not fully understand it, and sometimes it's a bit harsh. So the middle ground, definitely, would be better. Do you have anything? Also, not, it's hard to do it without patronizing, you know, or being condescending as well. Like, oh, are you, what do you understand about your heart? That, you know, when you, these are kids that, you know, don't, they see right through that. So I think it's very, it's a difficult situation, because how much information do you talk about? How do you talk about it? Knowing that they came from a place where we're very lucky. We have openly, and as I assume you have, we've openly discussed their situations. They know their past. They know their medical stuff. But, you know, there's most kids out there, those families don't have that kind of communication. And they walk in blind, and you've got a doctor who's just doing the right thing by saying, this is what's wrong. And it's just a different way, a different approach that is like a big slap in the face, kind of, when they come in. So I don't know if that helps, but. I think it does, maybe asking them where they are. Like, tell me a little bit about how you feel about that. Yeah, meeting them where they are and raising them up from there. All right, one more quick question. How do you feel about remote monitoring? Does it bug you when we call and say you're disconnected, or is that a good reminder? What could we do better on that front? She gets all the remote monitoring. Oh, it bugs me. So we have three heart monitors in our house. And his remote monitor sucks. It just doesn't work. It never connects. It's Wi-Fi based, you know, with the phone and with the Wi-Fi. It absolutely is a nightmare. In fact, I will tell you right now, it's not even working. He doesn't even use it because it just is a nightmare. And he's a computer science guy, like a million computers in the room and blah, blah, blah. We just have them plugged in. Mine's plugged into my room. Hers is plugged into her room. We don't even know. We get a text saying, we tested your heart last night. And I was like, okay, cool. I don't get a text. You don't get a text because it's hooked up to my phone. But it's a moot point. Like it doesn't even, whatever. We go every six months for monitoring in person. And that's mandatory because I am 100% dependent on my pacer. I don't have an intrinsic beat. He's second degree heart block. She's second degree heart block. And so we're regulars at the clinic. But it doesn't bother us. At least it doesn't bother me. And it's important. Thank you so much. I would say I love ours. It's actually been really useful in situations where Lucy has been at school and thought that she heard her device go off. And I've been able to instantly call the clinic and say, this is what's happening. And we run a test. And it's been really reassuring. And I'm just an anxious person. So to know that that's running in the background and always checking on her is great. I would say the weirdest comes when something is wrong with the remote monitor thing. And you have to call the device company. And they're like, okay, and tell me about the patient and when is their birthday. And you say, well, she's nine. And then they stop. Because it's so rare for them to hear from a pediatric patient. And when you look at all the booklets and things for the devices, it's all old dudes. So there's definitely a disconnect between those companies and what's going on in this community. That's totally true. Not to belabor the point of transition, but I do think it's an important part of care. And I work on the ped side. And I guess, and I'm lucky, I'm in one of the clinics that has an embedded cardiac psychologist. And I think we do a pretty good job. But going a little bit toward the question that you asked earlier of, like, how do we address the room when we walk in? Do we address the patient or do we address the parent? I think our group has had a little bit of an effort to, starting at that age, 11 or 12, really start to get the patient to own their own care. And so the comment slash question I have is how much of that transition, instead of saying in the adult world you guys need to be more gentle, be careful with that, how much of that responsibility should lie on the pediatric side to prepare you for that transition and teach the language and teach the health care? I guess I'm just curious about your thoughts. I think the pediatric side definitely needs to own a large portion of that. It was really helpful to hear from Chance and Cadence, who have already transferred their care, their perspective. But absolutely, I think that the work needs to happen. And what's so challenging and also I think just to acknowledge is that with this process, you have the patient, you have the parent and caregiver who could be at different levels of comfort with the patient taking on more independence in their care. You have the pediatric team and then you have the adult team. So you have all these different parties. And for some, if there's a specific insurance that mandates transfer at a certain age, you also have that to sort of be considering and attending to all these different aspects. But absolutely, I think it's on the pediatric side to start the visit, working with the patient themselves, increasing their comfort and confidence in that, talking to them about what is your history, what are your medications, and then gradually building and working on that. It's such a process like so much else that's developed. But I think owning part of that is up to those of us in PEDS. I would also add that it would be helpful to have that discussion with the parents in advance. Just send a note saying, you know, the next visit we'd really like for you to empower your kid to ask us questions. And this is how we're going to set it up. Because kids often get a little intimidated in the clinic environment. And also they're in a school environment a lot of the day where they're expected to sit and wait for their turn and things like that. So, you know, if you prep the parents to say these next few appointments are really going to be for your child to ask this, and this is why we're doing it, I think that's helpful and it empowers us to help them through that process more. Okay, so kind of switching gears a little bit. So we recently inherited someone from another clinic, and he had every restriction in the book for exercise. So he really wants to play soccer, he's 13 years old, and he has a pacemaker. And it's just been devastating. And they come to our clinic and we said, go and exercise. That's fine. And he also wouldn't fly in more than two plane rides. He was told that it was bad to be in the air. So we've been struggling with restrictions. I started in 2008 with pacemaker patients. And at the time, all of our cardiac patients, for the most part, we were saying, don't exercise. It's, you know, something bad can happen. So now we've liberalized it a lot, and I love to hear about the surfing and the horseback riding. That's wonderful because we are, as a group, I should say we're from the University of Iowa, but we're very big advocates for exercise and, you know, restrictions that make sense for people. How have you guys navigated the restrictions maybe changing over time and how that feels to you guys? For us? So they do have restrictions. And they do have exercise restrictions. Contact sports or anything where a ball could contact a device was out. And my husband's a football coach. He's his high school teacher and he coaches, you know, like CIF football type stuff. And we were told right away that he would never play football. Was it difficult? I mean, knowing the same breath, we're going to save his life. So we were like, well, okay. But the restrictions have changed. I will tell you what's difficult is there's no real clarity. Because you're telling from your clinic, you know, if they're told not to do this. And every kid is so different, so remarkably different. She's an anomaly when it comes to a hypoplastic left heart kid with a pacemaker. She's out there living life amazingly well. Does it come at a cost? Yes. She takes a ton of meds. There's other issues that are side effects from the heart and all that. But the restrictions have changed. And I think the clarity is a difficult one because even clarity on things like roller coasters. Oh, my God. Give me an answer. Can they go on a freaking roller coaster or not? So that's different for everybody. But I would like to see more clarity on some of those restrictions. She has to have oxygen on the plane. He does not. We can't go to above 3,200 feet with her without oxygen. He can. And I don't know where you guys are with that. But I don't know how to. I think everyone's so different with what their restrictions are, and somehow we have to figure it out. And we try to individualize them. In this case, this person we inherited has an underlying rhythm, and he really wants to do it. So it's shared decision-making. He chooses. But it has been an interesting thing. There's also really big advocates for MRI in patients with pacemakers. And, you know, it's kind of the same thing where people get really worried about it, but then you look at the 25,000 without any problems, and you look at some of the studies we have originally with Long QT patients and things like that, with ICDs versus medication versus both, you know, things like that. But anyway, it's just kind of more of a comment that it's been liberalizing over time, but, again, still needs to be individual. Not to segue on that MRI comment, but here's the thing that I think everyone can benefit from. Yes, there's been 25,000 people who were fine from that MRI with the device. You have a family here with three people with the genetic lottery winners who have not great luck. So out of 25,000, and I just had this conversation with my doctor. She's like, literally, the studies show it's safe, this and that. And then I read one article, a medical article, that said the pacemaker device can be dislodged from the chest. And I was like, yeah, I have bad luck. That's probably going to be me. So just taking that grain of salt, I understand all those safety figures, but the individuality here and hearing that and knowing that one risk is involved, that's very difficult for me to, and it can burn up inside your body. That was a lot. No, I was like, thanks. But anyway, I just wanted to answer that one little thing. Well, thank you, everybody. And I really want to thank our families especially for coming in today. Lucy has made her way back. And thanks to our panelists and the audience for asking questions. I know there were no slides, and the roller coaster question, by the way, will be answered this afternoon at 4 o'clock. But I think we're all leaving this with some homework, and the homework is to do better, right? And the patients, you know, this is a sampling of actually very highly selected and very finely curated patients, and they are giving us some very clear direction on do better, do your transition preparation better, advocate for psychological support in your centers. And the resources that we have prepared, you know, PACES as a society, I know when I was president a decade ago or so, we talked about, you know, let's make resources. So that's ongoing work, and clearly, you know, continuing to gather the data, the safety of MRIs, the safety of exercise, it's a moving target. But that's really the PACES responsibility is to be the leader in that field. So this is one of those talks where I think you actually go away with a lot more to do than you realized. So I really want to thank, again, everybody for participating, and I look forward to more conversations like this as the meeting unfolds. Thank you. Thank you. Thank you for the opportunity.

patient experiences

cardiac conditions

electrophysiological conditions

Long QT Syndrome

NKX 2.5 genetic variant

hypoplastic left heart syndrome

transition to adult care

mental health support

cardiology clinics

personalized care

communication strategies

psychological services

healthcare transitions