[COLD OPEN, clips from later in the episode]

Dawn: A huge area of importance during the adult years is certainly how these skills translate into functionally meaningful things like employment, educational attainment, as well as access to things like disability and maintaining things like insurance and continuing cardiology care.

Drezden: Cardiologists, psychologists, psychiatrists, geneticists, and a lot...

Dawn: Neuroscientists. A lot.

Drezden: I was hoping you would jump in and just say the hard words for me.

Dawn: You just teed me up there. So yes, I mean, and this was my passion and the reason that I created this project called,

[INTRO]

Drezden: This is the One Percent Heart, a podcast about survival against the odds, the people doing it, and the people supporting them. Today's guest is Dr. Dawn Ilardi, a pediatric neuropsychologist who specializes in children with heart disease. She also founded the Pediatric Neurodevelopmental Center in Atlanta and has a new startup, Parenting Kids with CHD. Both links are in the show notes. Today we're going to talk about a paper Dr. Ilardi recently led that's been published in the Journal of the American Heart Association. Dawn, thank you so much for joining me today. Now, before we get started on this paper, you might tell me about how you got started in research for congenital heart disease.

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[CONVERSATION]

Dawn: It's a pleasure to be here and talk about this. My involvement with research associated with congenital heart disease really started back in my early training when I was a fellow. And it started with single ventricle heart disease and looking at outcomes both specifically within certain areas of neurodevelopment and more broadly. And it's evolved over time with a number of different local studies at a single institution I was at in Atlanta, as well as some multi-site studies, some related to single ventricle heart disease, some related to tetralogy of Fallot, some related to medications and so on. And most recently, the paper that you and I got to work on was unique in that it was an opportunity for experts to really come together from around the United States and beyond to talk about adult congenital heart disease, which is a growing area of focus now related to outcomes in congenital heart disease.

Drezden: And what is the difference, and I'm trying not to say my own definition here, how do you see the difference between pediatric and adult congenital heart disease neurodevelopment associated with it?

Dawn: So, well, first I'll start with saying that the knowledge that we have gained over several decades of research related to pediatric outcomes, so things like their overall cognitive skills, things like attention, executive functioning, academic school skills, social, emotional, behavioral, adaptive, so level of independence, these kinds of areas have been measured for a while now in pediatrics. So I'd say pediatric systems usually align with children's medical systems up to about 18, 21 or so. Beyond that, the similar domains of functioning in adults, it's really just been growing in recent years. And I'm going to estimate it started to emerge maybe about 10 years ago, but it's really grown, I would say, in the last five plus. As you can imagine, they're the same skills as when you're a child and a teenager, but they are evolving and becoming more complex and we're prioritizing different skills in the adult years. A huge area of importance during the adult years is certainly how these skills translate into functionally meaningful things like employment, educational attainment, as well as access to things like disability and maintaining things like insurance and continuing cardiology care, relationships, getting pregnant, having a family, and so on. And then eventually at the opposite end of the developmental continuum, thinking about later developmental concerns like dementia. So we've really evolved more recently in our adult outcomes.

Drezden: It's focusing on the outcomes to find the patterns and figure out what to focus the research on, instead of focusing the research based on symptoms and seeing how those symptoms drive outcomes.

Dawn: Yes, we're trying to understand where should we be focusing in the adult years right now. And that was the importance of bringing together these experts for the neuroconference in 2024. Where should we be focusing? What matters? And importantly, what matters to adults with congenital heart disease? And that's why it was important to have someone like you, among other adults who were involved in this project, hearing your voices so that we know what matters. We as scientists sometimes end up thinking very narrowly about what we should be measuring, ultimately with the goal of figuring out how can we improve the quality of care and how can we improve access to knowledge and services when they're needed.

Drezden: And for those of you who don't know, I'm an adult that grew up with congenital heart disease, had surgeries, now. "Neurocognitive and Psychological Interventions for Adults with Congenital Heart Disease: A Consensus Statement from the Adult Congenital Heart Disease Neuro Conference of 2024," published January 19th of this year in the Journal of the American Heart Association. It is free for anyone to go read, and I highly suggest you do if you are an adult or parent of an adult with congenital heart disease. So you and I were there. We had another member, another adult from the ACHA, Adult Congenital Heart Association. But we had in that room so much damn brain power. We had cardiologists, psychologists, psychiatrists, geneticists, and...

Dawn: A lot. Neuroscientists.

Drezden: A lot. I was hoping you would jump in and just say the hard words for me.

Dawn: Cardiothoracic surgeons, yeah, it was a lot.

Drezden: What did all those people have in common and why did they come to Atlanta in the middle of April, a year and a half ago, to work on this together?

Dawn: Yes, so all these people that sat in that room to work on these projects shared their passion, their interests towards improving quality of life, improving clinical outcomes, improving research collaborations associated with congenital heart disease in their own disciplines, each of them coming together to try to broaden their perspectives, to take it back to their institutions as well, and to figure out where do we need to go, because we all know that we are evolving.

Drezden: So this was a cross-functional, cross-expertise group of people that sat down with data, with research, with lived experiences, with clinical experiences and figured out, based on patterns and their own knowledge, what cardiac developmental problems and issues that research needs to focus on to make it so that patients today can either live with these issues better or not develop the issues in the first place. So this was a lot of very smart, very educated people coming together, working through this and publishing this paper after a year of deliberation, selection, writing, all this work, hundreds of hours. And let's just say, I mean, these are people with doctorates and advanced fellowships and trainings. These are expensive people. So hundreds of very expensive hours. Now we have a product. Now we have a paper that tells people what needs to be done. What happens to it?

Dawn: Hmm. That's a good question. Now that this paper has been published officially, it's available. This knowledge, these ideas, these very explicit suggestions for where the field needs to go next, specifically, and I'll talk about the project you and I worked on, related to intervention supports for adults with congenital heart disease, now it's available. So what does that mean? Well, that means that professionals who are in each of these disciplines and care for adults with congenital heart disease can read it and consider: how does this apply to my routine care in the clinic? How might I use this to go to my administration and change a program or grow a program? How might I work with my advisory council at my institution, which might include other adults, to grow or build something? So first, it can inform clinical care. Next, it can inform researchers about what we need to measure, what we need to understand, where the gaps exist. So we're also guiding the future directions of science and what they need to be prioritizing. What it doesn't necessarily do is inform other adults with congenital heart disease. And I think honestly the reason why is that these papers are really dense. There's a lot of jargon, and they're not always easy to find. And they're certainly not advertised commonly in places where most adults in the public would be reading their information. They're sitting in a link when they're open access and available to the public on the journal's website, their platforms. So there may not be a lot of knowledge about something like this. So while the knowledge might be shared when the clinicians or the researchers know it's available within their institutions, sometimes it just doesn't go much farther than that.

Drezden: So that raises a really important question here. So this is a paper that tells you what a lot of the patterns are with patients with adult congenital heart disease, what resources exist for them, what data exists for them, and what doesn't, where the gaps are. So a patient could very well benefit from knowing that. And I'll take it a step further. A friend of mine from another board I'm on published a paper about how, and I'm bastardizing the summary here because I'm not, I like numbers and I like stats, I struggle with the medical terminology, but if a congenital heart disease patient goes to the doctor once a year and just gets their routine checkup, the chances of an extreme event drop considerably because the problems were found earlier and the cost to the hospitals is lower. That to me, because the cost of hospital being lower is also cost to patient being lower, is some really great data to get in front of patients that, you know, are part of the 75% of adult congenital heart disease patients lost to care. But that paper, much like this paper, doesn't seem to be getting in the lexicon. It doesn't seem to be getting in front of people that need it. Is that just a problem throughout?

Dawn: Commonly it is, Drezden, and while this paper in particular is in some ways mostly guiding science and clinical care and the future of it and how to improve access to interventions for adult congenital heart disease for neurocognitive and psychological supports, I would say that some adults with congenital heart disease might find it interesting. But I will say, sadly, this pattern is true for the large majority of science. So even when it has very direct implications, such as the study you just described, disseminating those findings, explaining them to the public, it's not happening like it should. And this is a pervasive problem across science, I would say, not just within congenital heart disease. Something that's really frustrating.

Drezden: Is it, so it's a mixture of the difficulty of understanding the articles themselves, because I saw firsthand these articles are densely worded and every word is basically argued over to make sure it's the right word to choose. So there's a translation gap where something like this doesn't necessarily make sense to the patient who needs to read it. There's an accessibility gap because a lot of them are behind paywalls. They're not made publicly available because you have to pay extra for that. So there's a lot of great research sitting that could be helpful to patients. And there's not much we can do about it.

Dawn: It is true that there is a lot of research sitting there that has not been translated to the public in a way that it's digestible and could contribute to change. And I would say that the scientific community's interest is starting to change. So I don't want to say that there's nothing we can do about it. But there is a growing interest, in fact, the president of the American Psychological Association recently, and it may have been as much as within the last eight years or so, I believe her presidential speech was about the importance of translating science for the public. So yes, I think the interest is growing and there will be new ways to do this. And it needs to become the priority and responsibility of the clinicians and scientists that are producing this. But the problem of making this happen is where we sit. It's not that it doesn't matter. It's not that they don't care, because they do. It's: how do we make it happen?

Drezden: That is a very thoughtful answer, and what I was trying to do there, this is for the listeners too, Dawn is making a program that makes it so that you can go on if you're a CHD parent and get tangible, actionable understanding and things you can do to help parent your kid. Online, easy access. And because it's not correctly translating these articles but is instead translating your knowledge of everything and your clinical experience, that's what I was trying to build to, because right now that is the most effective way to get the summaries of this knowledge and the clinical experience in front of people. So instead of me trying to be subtle about it, will you tell us about what you're doing?

Dawn: Drez, and you just teed me up there. So yes, I mean, and this was my passion and the reason that I created this project called, or this startup called Parenting Kids with CHD, because the access to the information that parents need to understand what the science is telling us about their role in raising their children and getting their children access, how to advocate for them, there's a huge gap. So with this program I've created, Parenting Kids with CHD, I'm trying to break down those walls with online videos that explain things and bring you practical tips as well as summaries of scientific articles that I believe are directly relevant to the common questions that you have.

Drezden: You said "in summary of the scientific articles."

Dawn: Mm-hmm. Yeah, scientific summaries, that's right.

Drezden: So that gap we're talking about between how the articles were tough to understand and people need a way to understand these densely worded materials, you're doing that.

Dawn: Yes, I am. That is what I am trying to do, to make these things parent-friendly, accessible, and directly linked to what they can consider now, what they can do.

Drezden: You know, it occurs to me how difficult, I mean, there are not many adult congenital heart divisions at hospitals. There's a few more pediatric congenital, but it's still a struggle to get care. And when you throw insurance difficulties in there, all of a sudden, I mean, I can only imagine the, I know how difficult it was for me every time my mom or my dad changed insurance growing up and I had to go find a new cardiologist, or when the insurance we were on didn't negotiate with the same doctors. I think I had 11 cardiologists in the first 18 years. It's funny. It sounds like if you're just putting this online, that becomes a non-issue. Now with the caveat that it doesn't replace direct care, it supplements it. But in terms of, I'm trying to think of how a parent can go find applicable tips to take care of their child with this condition that's not a book on a shelf somewhere that someone might have written, or blogs from other parents. I mean, this is direct advice from an expert.

Dawn: Yes, that was actually, that's exactly the goal. So I'm going to tell you a concrete data point that was extremely eye-opening for me. I don't remember the year, I'm embarrassed to say, that it was published, but I'll just say it was somewhere around, let's just say 2020 or so. The Cardiac Neurodevelopmental Outcome Collaborative did a very large study where they looked at neurodevelopmental follow-up rates, so the percentage of families that return for a neurodevelopmental follow-up evaluation at these institutions, these pediatric institutions where they have a very structured, formalized program. The percentage of families in these structured, high-resourced institutions with just dream-worthy programs for neurodevelopmental follow-up varied somewhere from lower than 10% to up to 50%, but the average was 29% of children who are high risk, who should be getting a neurodevelopmental follow-up evaluation. And that was shocking to me. And I'll tell you, at the institution I was at, our return rates for this evaluation was 10%. We had a very large, well-established, protective cardiac neurodevelopmental program. And this is when I realized, along with my anecdotal clinical experience, which is the number of times parents would come to my office and say, "Why didn't I know about this earlier? Why did I always wonder if my child's heart was related to his developmental problems?" So not only in a high-resourced institution with only 10% of these families coming for an evaluation, at institutions with no follow-up program or in rural communities where they don't have a specialist, it's 1% or less than that. The need is massive. And Drezden, my goal with this Parenting Kids with CHD program is not necessarily to give them all the answers about what to do next. It's to arm them with knowledge so they can use what they have in their community. I'm going to guide them. I'm going to talk to them about how to talk to the school, to the football coach, to the counselor, to the speech therapist, and to their cardiologist. How to ask questions. How to advocate.

Drezden: I'm happy you said that because there's the thing with the hard issues that always tends to screw me up, historically. It's changed now that I'm on the Cardiac Neurodevelopmental Outcomes Collaborative and I'm involved in the ACHA and I have a Google. But what always screwed me up going on early on was I didn't know enough to know what questions to ask.

Dawn: Yes. Thank you. That's exactly right. That is the core of what I think needs to happen with something like Parenting Kids with CHD. I want to give parents language. Words. They actually know everything they need to. They see their child. They see the strengths, they see the weaknesses. I want to give them the patterns. I want to show them how to talk about it. I want to validate what they see, so they know that it's actually happening, and empower them to take a step in the direction that will help them feel like they're doing what they need to in their parent role.

Drezden: This is anecdotal, but just to really hammer that point. My dad was a, he's retired now. He's a very successful attorney, very smart man. My mom is also very intelligent. Again, both are still around. They're just retired now. I just don't want to speak wrong here. We didn't know that CHD, congenital heart disease, was a community, was a thing, until I was 20 years old. My dad, who would read the entire insurance document to go get the best cardiologist for me every time we had to change, who could fight, argue, and win no matter what, we were never told, and we didn't know where. I mean, everyone probably assumed we knew, and we didn't know what to ask. So I was going to the same cardiologist as my dad for a few years, you know, the acquired heart disease specialist. So you're arming parents with the knowledge and intelligence to go ask these questions. And being the business bro I am, let me just say: this can't be specific to the CHD community. This issue of parents not having access to the resources to take, to go a step further from physical care to neurodevelopmental psychiatric care as the child grows and ages. So if you can prove this out, what's stopping other specialties from just mirroring this approach?

Dawn: I hope they do. I hope they do. I'm trying to change the way we build bridges between our communities and our academic and medical institutions.

Drezden: Exactly. That would be amazing. So in the last episode, you talked about how when you were undergoing your clinical psychologist training, you were on the physical rehabilitation floor for patients after extensive surgeries that needed to learn to speak, walk, that kind of thing again. And you saw a pattern between the heart and the brain. And you started running that down and now you're an expert in cardiac neurodevelopmental outcomes because you saw a problem and no one was doing anything about it. And you're attacking it. It kind of reminds me of how you solve a problem here with getting the information in front of people and you found a way to attack it. That's a gross generalization, but good on you for that. What can someone like, and I don't know if you have an answer for this, but what can someone like me do who cares passionately about this and wants to help? Is there anything we can do to try to disseminate this information besides trying to read these articles and telling our friends about it? Like, is there any best practice here, or is this really reliant on the providers that have dedicated their lives to patients like me? And this is an off-the-wall question, we can,

Dawn: No, I think that you're actually doing it. I think having this podcast, the point is to have more conversations. Let me tell you this. Part of our problem has been that we've relied on a very narrow, linear process for disseminating and sharing information about congenital heart disease, and we've heavily emphasized what needs to be shared within the medical institution. Sometimes in a given visit, a cardiologist has so much that he or she needs to focus on that they don't have time to talk about these other things. So what if we expanded the responsibility beyond the medical visit and we handed off the responsibility, we shared it, to the communities outside the medical institutions? So people like you, adults with congenital heart disease, who can talk about the One Percent and, whether it's all the other avenues we're trying to have these conversations, whether it's a podcast or these various different congenital heart disease advocacy and research organizations, other parenting groups, we need to keep talking and expanding the networks outside medical and academic institutions. Let's make a bigger web.

Drezden: So it's awareness. It goes back to the problem that congenital heart disease has in the way, and I always hate saying it this way, it's an awareness issue. People aren't aware of what, they're not aware they're part of the community. Like I wasn't, like other people I've met weren't until they were older. And it's disseminating information when you're not aware that the information exists. It needs to be an interconnected web. If you want to say something there, because I'm going to switch the subject pretty dramatically.

Dawn: Yes, Drezden, it's an awareness issue, but there's things embedded within that. Awareness about what? So first, awareness that congenital heart disease may need to be managed lifelong. And what is congenital heart disease? Some people don't even understand what congenital heart disease is. So understanding the disease itself and understanding what can be associated with congenital heart disease, which can be related to emotional and cognitive health as an example, and then how it affects the family also.

Drezden: That is a lot of knowledge. You know, I'm just going to shift the subject here because there's something I wanted to tell you on this podcast. When I first went to my first Cardiac Neurodevelopmental Outcomes Collaborative scientific sessions, that would have been the one in 2024 in St. Louis, because I was on the ACHA's pre-conference panel and I answered some questions, I got a free ticket to the rest of the event. And I remember sitting in a meeting, in a lecture, where a gentleman had gone after some big problem with babies having seizures and the anti-seizure medication after heart surgery, and how changing the medication saved a shit ton of babies. And I remember sitting there, and I'm a, finances is my trade, so I'm very familiar with regressions, coefficients, correlations, and he was going into the nitty-gritty of the numbers. And I just sat there and thought: if we could just teach people that are as smart as all y'all how to, like, more say what their research means in a marketing-focused, soundbite kind of lens, like if there was anything we could have recorded from that speech and put on a 90-second TikTok, the magnitude of who it would have reached would have been bonkers. And it goes back to the translation issue in a way. Translation, people digesting the information, translating it to an easier format, and then spreading the crap out of it. That's how I see the issue.

Dawn: Yeah, and that translation, that might seem very simple. It's not. Simply because of what you guys do, let me tell you. It's not, it's not just about selecting the words and the soundbites and figuring out how to distill it. But that's one challenge. The next challenge is, you know, the knowledge that's being accumulated, this is a massive village of experts across every discipline imaginable, really, of medicine, psychology, speech therapy, occupational therapy, every discipline pretty much that touches healthcare is involved in trying to understand congenital heart disease. So it's a huge amount of information. But these providers, these scientists, they work so hard. And sometimes the science that they're doing, it's actually not even their full-time paid job. Their job is actually to be a clinician. But they're involved in research because they believe, they find value in growing science and how that feeds the quality of care and the future of the lives of individuals with CHD. So if they're not even paid for this, are they going to find the time to do this? And then the researchers who are paid, they're on 10 projects. How are they going to find the time? There's many reasons the translation doesn't happen.

Drezden: I knew that because I've worked with you guys, you know, but it never really clicked with me that this is, they're up there talking about their side project.

Dawn: Yeah.

Drezden: So asking them to do more with it is a big ask.

Dawn: It is a big ask. And then, where do you share this information? Are you allowed to share it? Does your institution allow you to present your information at such, you know, like on TikTok, or right? Where are you allowed to speak about this information? Does your research group want you to present it in this way? Do you need to get approval? And so on.

Drezden: Well, that is, I like that because it kind of cleanly sums up the issue we're facing and speaks well about the article that you and I have put out with a great team. Now, we're coming up on time and I don't want to end on a "have to find this problem" kind of statement. You mentioned the Cardiac Neurodevelopmental Outcomes Collaborative. And you mentioned in the last episode too how you've been really involved since the beginning. Am I right there?

Dawn: That's right.

Drezden: And it's a bunch of experts focused on the heart-brain connection, sharing their research and coming together from across the world, right?

Dawn: That's right. Yeah.

Drezden: Tell me about that. That will be the happy ending for us today.

Dawn: Yeah, and we're all about it. So CNOC's initiative is definitely taking a role in the dissemination of science across these different spheres. Certainly they are sharing and cross-pollinating from research to clinical practice and trying to inform each silo, which isn't happening easily. CNOC is taking the lead on that. CNOC is also involving, including, and oh, empowering with leadership, adults, parents, and in some cases you even hear the voices of children. And even if it's through video at these conferences and with projects, research projects that are growing, using these different perspectives of stakeholders to be able to make sure we have a well-rounded perspective of our mission and the goals. I'll say "our" because I was so involved in leadership for CNOC, which I am not now, but their mission, their goals for next steps. So CNOC is definitely taking a role and finding new ways to disseminate this science. But CNOC is also a big system. It's a huge system, tons of experts, and even a lot of adults with congenital heart disease and parents. These systems, they move slow. And even one podcast or one newsletter or one parent webinar can take months to create and get it out there. But this is a huge, hopeful and collaborative, passionate mission, and it will happen and it will keep growing.

Drezden: It will happen and it will keep growing. I like that. I like that, because at the end of the day it seems like this podcast, that organization, your startup, we're all running through the same end goal, which is getting information and resources in front of the people that need it.

Dawn: Absolutely.

Drezden: Now, I always end with this question, and I did just record an episode with you earlier and it's going to be the same question, but through a whole different lens, because before we talked about the heart-brain connection and now we're talking about research and the heart-brain connection. But everything you've done, everything you've published, everything you've seen and everything you've helped create, at this stage, what does the term "CHD" or "congenital heart disease" mean to you? And I don't mean the anomalies in the structure of the heart present at birth. I mean, what is in the back of your head and what do you feel in your gut when you hear the term CHD?

Dawn: Mm-hmm. CHD, and I tend to be visual, so again, this might sound very cheesy, but CHD in the context of research and science, if I imagine it, to me it looks like a building with a whole lot of windows and doors. Each time I open a new window or door to understand CHD from a scientific perspective, I just enter a whole new world. CHD is so complex. We are at the beginning of a long road ahead. It's going to continue to evolve and teach us about how to improve and expand well-being.

Drezden: I liked that visual. I was a little overwhelmed getting it in my head. It really is, it's a whole world of, you can be on the outside looking in, or you can be going down a hallway where each door is going to take you to a new realm.

Dawn: Yes, exactly. A lot of rabbit holes to go down on that one.

Drezden: Dawn, thank you so much for taking the time with me today.

Dawn: Your questions are phenomenal. You pushed me to think about new things. Thank you, Drezden.

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[OUTRO]

Drezden: And that was Dr. Dawn Ilardi. If you want to learn more about Dr. Ilardi and see her two projects, her main practice and her new startup, I have put the links in the show notes. I want to thank you all for taking the time to listen. And if you did enjoy this episode, remember to subscribe and remember to check out our other episode with Dr. Ilardi. Thank you all, and talk to you soon.