[COLD OPEN, clips from later in the episode]

Drezden: I'm in finance and I tried to explain my job to my girlfriend once, my ex, and she kept calling it money science for years after.

Dawn: I just knew I wanted to go into clinical psychology. I always found I would naturally connect to people. I loved the way it felt. And so then I got more curious as I grew up.

Drezden: So you get to do that with brains and personalities, two very easy things to understand, right?

Dawn: Yeah.

[INTRO]

Drezden: This is the One Percent Heart, a podcast about survival against the odds, the people doing it and the people supporting it. Today's guest is Dr. Dawn Ilardi, a pediatric neuropsychologist who studies what happens to a child's brain during and after heart surgery. She also founded the Pediatric Neurodevelopmental Center in Atlanta and has a new startup called Parenting Kids with CHD. Both links are available in the description. Dawn, thank you so much for joining me today. I know it's been a while with the scheduling.

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[CONVERSATION]

Dawn: Drezden, thank you for having me. It's just a real honor to have this time to talk about things that we both feel passionate about, growing, changing, spreading.

Drezden: Before we dive in, do you mind telling us a bit about yourself, your background, and how you describe what it is you're doing?

Dawn: Sure. So pediatric neuropsychology is a pretty confusing area of expertise, but essentially I'm a clinical psychologist, generally trained. And that just means I'm an expert in understanding, measuring, observing, and trying to support and change human behavior and thinking. And the "neuro" part is specialized training related to the brain, and how diseases, disorders, and different kinds of medical conditions change how the human experience feels and evolves across development, and then comparing that to what's typical. So my focus, knowing this, has started off in the medical system and evolved across time in different settings in the medical system. Helping families and schools primarily to understand a child's strengths and weaknesses in real life, not just from their medical records, and giving them a plan so that they can do things, so that they have more meaning and supports.

Drezden: I like how you broke it up there because it made it easier for me to understand. So development is how a person learns, grows, and becomes during childhood. The neurodevelopment is how the brain, brain chemistry, brain, use better words, but how the brain is developing during that time. And pediatric is the child focus. So pediatric neuropsychologist, pediatric neurodevelopmental studies. Those are a lot of really big words, but,

Dawn: I know, it's too much esoteric language and it's hard for even my family to understand what I do, if I can be honest.

Drezden: It's okay. I'm in finance and I tried to explain my job to my girlfriend once, my ex, and she kept calling it money science for ten years after. So how did you get into such a highly specialized field? And then you took it a step further and you focused on the cardiac aspect. Just to keep it clear in my head, it's how the heart influences the mind or the brain during the development of the person. It's a subspecialty inside of a subspecialty inside of a,

Dawn: Yeah. Yeah, I started really general, to your point. I just knew I wanted to go into clinical psychology. To be honest with you, I always found I would naturally connect to people and people seemed to trust me naturally, and I loved the way it felt. And so then I got more curious as I grew up about the human mind and what we could do to make humans feel, just have better wellbeing. It sounds very cheesy, but that's where I started. And as I got into my PhD, I realized that in order to understand the manifestation of emotions and behaviors, I had to understand the brain too. So like what it looks like to me, I also needed to understand the biological correlates of that. So I started off general, just being curious about humans, and then going deeper and saying I have to understand the biology behind what I see as I continue to progress in my career. I stumbled into some patients when I was on the inpatient unit. The early start of my neuropsychology career was on a rehab floor. And this was after children and teenagers, young adults had any kind of acute injury or a surgery that affected their daily functioning so much so that they needed intensive speech, occupational, and physical therapies. And so they would stay in the hospital. And this would have been way back in like, let's just say 2007, 2009, during this time period. And there was just a handful of patients during this time that came to the rehab floor after some kind of event associated with their heart, their congenital heart disease, whether it was a stroke after their heart surgery or another event. But I couldn't understand why neuropsychology as a field had not prepared me to understand the relationship between congenital heart disease and the brain at that time in my training. And I'm at the postdoctoral level, the highest level of my training. So I'm doing a bunch of research and I stumble into some things that are happening in the Emory community where I was here in Atlanta. And it was primarily focused on single ventricle heart disease and what this was looking like. And the studies were in the early ages of development. But still, why didn't neuropsychologists understand congenital heart disease? Why weren't we studying these kids? And why weren't they coming to neuropsychology systematically? So I got activated, got involved in research, and then slowly over time became part of a small group. And it just dominoed from there, Drezden. A small group of us in 2012 came together from around the United States, institutions that cared about the same thing, which is getting kids involved in neuropsychological follow-up. And it turned into the Cardiac Neurodevelopmental Outcome Collaborative eventually, and so on and so on. I could get ahead of myself, but it started with just a few patients and a need that was completely unmet.

Drezden: So you saw the, and for anyone listening who doesn't know, there are neurodevelopmental outcomes that do happen for patients commonly with congenital heart defects. Patients with congenital heart defects are more prone to certain mental illnesses and more prone to certain other aspects. But it sounds like you saw an obvious, in-front-of-you correlation between people born with heart defects coming to be rehabilitated after some post-cardiac event. And you're like, why is no one researching this? So you went and researched it and you went and found people that came to the same conclusion.

Dawn: Well, I did find that there was more research than I realized, but it was really housed within the field of cardiology. It was not jumping over into neuropsychology. And that's commonly the case when something is emerging, it tends to stay very discipline-specific, and that's what was happening at the time.

Drezden: So it got siloed in cardiology even though it would have helped you directly and should have been a part of your curriculum.

Dawn: That's right, yes. And that's commonly the case as well, where when we start to understand something on the science side, it takes a little while for it to even spill over into clinical care. So not only was it staying siloed in cardiology, it was not jumping from the research science side into the practical side, which is me as a provider, as a postdoc, like: what do I do with this science?

Drezden: And I'm happy you said that, we're going to talk about this a lot in the next episode: how not only does it not go from division to division, but it doesn't go from finished research to parents and patients. But for this aspect, how it stayed siloed in cardiology, just to kind of talk about why that matters in plain terms, what's the difference when a pediatric cardiologist sees a kid and when a neuropsychologist sees a kid? The same kid. So if a neuropsychologist and a cardiologist are looking at the same person, how is it different?

Dawn: So, you know, I'll start off with the practical considerations because the context and constraints of care, they really do matter. Every provider knows that they have a limited amount of time, and so they're going to focus on the things that they perceive matter the most in that time. Certainly the cardiologists, with their expertise on heart health and how that's going to impact the child's body and physical health, that's their priority. So they're going to be focusing on whatever lab they have, medications, any input about what do they need to do to manage heart health. The things they can address.

Drezden: So it's not a bias, it's the things they know and the patient is there for.

Dawn: Absolutely. Yep. It is not a bias. It's their expertise. That's their gift. When that same patient walks down the hall and comes to see me, I am not going to talk about the structure of their heart or the medications or any of this. I'm going to think about the child in terms of their brain health and how this shows up in school, in friendships, in their self-esteem, in their behavior, their emotions, how their parents are able to support the child, and where the gaps in all that are occurring. Drezden, I'll add something. As a neuropsychologist, it doesn't always stop there, because I need to review the medical records to see how this might present risk or protective factors for the child's brain and everyday functioning. I'm going to review their cardiology records. I'm going to review any prior brain imaging or EEGs that might show seizures or neurology consults or what happened when they were in the hospital, et cetera, et cetera. Risk factors that could help me understand what I'm going to see and what I'm going to hear from the parent.

Drezden: I appreciate that clarification because I struggle, I mean, I still struggle between psychology and psychiatry, to be honest. But at first it sounded to me as if the cardiologist was working on the physical anatomy, the anatomy of the heart, the anatomy of the body. And then you were taking it a different direction where it's the whole wellbeing of the person going through this experience. Then you tie it back to the architecture of the brain. So, I guess because the brain is development and behavioral and that's how it presents, you fall into this, you have to do the kind of like looking at a business: you have to look at quantitative, you know, the numbers, and then qualitative, the unquantifiable part, the part that you can't throw numbers on. So you get to do that with brains and personalities, which are two very easy things to understand, right?

Dawn: Yeah, yeah. And you know, you might think that things like MRI or brain imaging is entirely quantitative, but it's not. Even the data that I'm pulling from a patient's chart, there is an art to putting this information together to understand what it means in terms of what I'm observing in front of me too. So you're right. I'll give you a very simple example, Drezden, maybe this will help. If I review the brain imaging, I'll just make up two patients. The first, let's just say, is a six-year-old boy and he has had a large stroke in the posterior back area of the brain, and on the left side. He's presenting with some developmental delays, but I don't really know much before he walks in the office. So I start developing my hypotheses about what this is really going to mean, knowing that it's in the left posterior area of the brain. And I might be thinking about areas of literacy and language and reading and maybe some other things. So he walks in and the parent says to me: "He's doing amazing. He's in the gifted class. And he's got some mild challenges with attention and processing speed, but he's doing incredible." Okay, so child number two, I'll make up. Let's just say this child is 11. I look at his brain imaging and his brain imaging shows just some teeny tiny kind of like punctate abnormalities in the white matter of the brain. And they just say it's multifocal, but they're teeny tiny and otherwise uncomplicated. And I don't know much about this child's development. Then I talk to this mom, and this mom says: "He's failing in all of his classes and he's struggling to make friends," et cetera. So in this way, brain imaging is just one piece, as is the child's type of CHD and overall medical history. It's one piece of the puzzle that we put together, along with the observed and measurable characteristics of development in the office with the psychologist.

Drezden: So in a way, and I'm just thinking this through in real time, you have to not only take what the parents say, take what you observe in the kid and what you observe in the medical file, but you also have to consider the source. You have to take, you know, this could be a very high-strung parent or this could be a very lax parent. That's giving me like 600 questions here. But at a high level, well, let's talk about those parents again, because I think expectations are a big part of what drives, what is the biggest misconception a parent would have after their, neither of those situations, but generally, the misconceptions the parents have about their kids after heart surgery. Do they think that they'll be, and I'm sure it runs the gambit, but what are you seeing in terms of parental expectations after a kid goes through something like this?

Dawn: I'll try to simplify it, but you're right, it's very complex. But if I think about it along a continuum from lots of worry and stress related to the child and where they're at right now, to the opposite end of the continuum to no worry, okay? So I'll kind of use these two camps. The first camp where I see a misconception is really that things like the child's cardiac disease is the strongest predictor of outcome. So things like single ventricle disease or a history of a complex course, multiple surgeries, et cetera. While these are very important predictors of outcomes, what parents just don't always initially seem to understand is that their influence, that the resources that we provide children are sometimes even stronger predictors, or if not equal, to all of these medical risk factors. So if I could say it more simply: one of the misunderstandings is that parents, environment, and family, they matter so much in terms of predicting outcomes. On the opposite side, Drezden, families that are, I'll say, not ready to look at their child for various reasons. Sometimes it might be because of medical trauma or a lot of anxiety or overwhelm in the parent for lots of reasons. And when they see their child, they've waited so long to get help because they misunderstand that the congenital heart disease, the high-risk pregnancy and the other things have put this child at risk, and early intervention matters. Watching, waiting to see if they'll grow out of it, that's not the best approach. So the other misunderstanding on the opposite side is that "if I just love my child and I support them and I protect them, they will be okay."

Drezden: Wow. The latter one is almost: we're going to deny this ever happened and not account for it and pretend everything's normal and not talk to the neurodevelopmental experts. Whereas the former is saying the same end state but a different way to get there as well. "This happened. Now this child's going to be different. Let's just throw in the towel, lower our expectations, not give the same resources."

Dawn: Sometimes that happens. Yeah. But I think, you know, on either side of the spectrum, what I know to be true from my clinical experience and following some children, because I was in the hospital setting for 16 years, I followed many of these kids for years, so from clinical anecdotal experience and from the research, is that what parents access, the resources, the interventions, the school services, their own mental health support, their own social connections and so on, these are really powerful predictors of how the child is going to do.

Drezden: Is that true even in children without cardiac disease?

Dawn: It is. It sure is. And where I think the megaphone needs to be even louder for congenital heart disease, if I can say that,

Drezden: This is the megaphone.

Dawn: Okay. Where I brush it on, is that my feeling about parents of children with congenital heart disease is that they have dealt with this oftentimes since before the child was born. And then oftentimes they have medical trauma or they have such heightened stress and loss and grief and anger and anxiety and shame and so on, the whole entire, often, life of the child, that parents need to be empowered rather than to sit in this place of fragility, of fear. What I am trying to do is help them realize that they actually have so much power, that even though they've been harmed and stressed, sometimes since pregnancy, they're in a position to alter the course, oftentimes, of their child's outcomes. And that's not always the case in other disease populations.

Drezden: Not that the parent doesn't have the outcome power, but that they're as fragile. And then they have a lot of influence in this situation.

Dawn: Yeah.

Drezden: You said something in there that I want to hammer on. I had three heart surgeries, open heart at six months and another heart at two years and one at 16. And I remember, I don't know the first two. I remember the last one. And I remember seeing, because I was too young to remember the first couple. It was something I always had. So when I was going in for a cardiac catheterization where they just go through the leg, they make the stent bigger that's already in the pulmonary artery, to me it was a, I mean, it wasn't nothing, but it was kind of like: "Oh yeah, this is like a hernia surgery, this is like a broken arm, it's just something they go in and fix." And I was 16. And I just, I saw the shift in my parents and figured it out years later. And I still, I mean, when I try to tell my dad, like: "Hey, you know how whenever I mention anything about what my cardiologist said, or some limitations, or some things to look out for, and your first reaction is: 'No, you're completely fucking fine. Here's all the things you can do. You work out more than anyone I know, you do this.' I get what you're saying, but you know how that's your reaction? Now that's kind of like a trauma response." And the argument devolves from there about how he can't have trauma because he's not the one that had surgery. And I think framing it to parents as: taking care of yourself is not only critical for you, but it helps you raise that child better, helps you improve. Taking care of your own mental health helps improve your child's outcome. Say that's true so that I can make parents go take care of themselves.

Dawn: Let's put the megaphone up again. Yes. I mean, that's a mantra I would like, you know, just blasted across the sky: that these hearts are developing, these children are developing stronger and with better quality of life with supported parents. And from a young age, the parent is the mountain, the backbone, the regulatory system that the child relies on. And that doesn't really stop, honestly.

Drezden: Absolutely. We need supported parents for children and teenagers and young adults with congenital heart disease to feel like they have something to stand on, something to stand alongside. I'm happy you mentioned the multiple stages of development because it's something I've seen with all the groups I help out with. I'm putting this into words on the spot here, but it's almost jarring for the parents in a way, because they go from having a medically fragile child to a "normal" young adult. So all of a sudden your kid's going to college and you have to take a few steps back, but you're going through normal "my baby's leaving the nest" kind of thing, but you're also going through: "I saw this kid with, you know, I have pictures of me with all these tubes coming out of his chest, the cut down the middle, breathing from a ventilator." I've seen all that and now they're going off. So I think a lot of this is harder for the parents depending on the ages of surgery, because not only are you having to go through your own trauma related to it, but then you're going through all the normal stages of development and then watching your kid go off on its own where you can no longer protect them.

Dawn: I just got chills. It's like we have to prepare for it even afterwards. When I tell people in the community what I do for my work, oftentimes, if not nearly every time, they look at me and they say something like: "That's so sad. It must be so hard to watch these kids and these teenagers grow up." And that's not my experience at all. It's just what you just said, Drezden. These children, these teenagers, don't know any different. That's where I see the incredible resilience. It's the parents. The parents, that's where I see the pain and all the emotions that I've listed. And oftentimes my care, while the child or the teenager is the identified patient, sometimes I feel like my care is much more focused on that parent from beginning to end. And I'm doing many intervention sessions along the way, guiding them to support their child, even though the intention is to care for the child.

Drezden: I got a lot to say there. I can see how that would happen, but a very smart doctor just told me a couple of minutes ago that caring for the parent is caring for the child. So I can see why you do both. You also hit our buzzword, resilience. Every CHD patient, provider, advocate, it's all resilience. And the infantilization, the "poor you", I'm sure there's a better term for it, but even the fact that you're a provider talking to people and the first thing they say is "that's so sad." And I can name, I've got statistics about how CHD patients are more optimistic, the outcomes are getting better, it's the hidden disease. But the fact that their first reaction is "I can't believe you have to deal with that, it's so sad", to you, an expert in the field, when the majority of CHD patients are fine. I mean, they have to track and monitor, but, when I was speaking to my MBA class about the Adult Congenital Heart Association's Walk, I had two guys, one of them a former Marine, come up to me. He's like: "Hey, so I had to have heart surgery when I was a kid because of this thing they had to fix, is that like a CHD?" I'm like: "No dude, that is a CHD. Who's your cardiologist?" And another guy who had a similar thing, he's like: "Well, because my other, I had some other issue that was related to it." I'm like: "Yeah, but you also need a cardiologist for your CHD." He goes: "No, but I have this." I'm like: "Yeah, but it caused that. That's an abnormality in the structure of the heart." So the fact that there are so many people out there, one in 100 are born with it. Most people don't know the blanket term. They know their specific, you know, ventricular septal defect or pulmonary valve stenosis, they know the specific.

Dawn: And still the first, yeah, so.

Drezden: You talk to all these parents afterwards that have been going through it for so long. But that in a way is survivorship bias, because there is a chance for each patient that something goes wrong. If you are talking to a parent whose child was just diagnosed and they're about to go into surgery, knowing that there are different potential outcomes, what is it that you would say to them? What is it that you would tell them? Because in a way they have to prepare themselves for the best and the worst. And in this case, preparing themselves for the best still means preparing themselves to come talk to you in a few years and make sure everything is still going well and taking care of themselves and taking care of their kids.

Dawn: Well, first, I think my priority in talking to a parent before their child goes into surgery would be to help them find a place where they can stay centered, because their child is going to need them when they come out of surgery and before they go into surgery. So my first priority would be just to make sure they feel like their basic needs are taken care of, that they have some kind of resource to lean on, that they use the resources within the hospital, whether it's a chaplain, a social worker, or even the resources they need for their child: child life, or a psychologist, a counselor, et cetera. Because by helping that parent feel like they're standing on their feet, they're really going to be able to do the thing that they already know how to do, which is just to love and be there for their child. So first, I want to make sure they feel grounded. Second, I want to make sure that they have a clear sense of where their role is in the hospital, what they can do so that they can maintain their identity as a parent, that biological need to care for their child.

Drezden: Yeah, exactly.

Dawn: Make sure they've had their questions answered about that. What's going to happen right after surgery? What can they help with? Things like this. What I'm not going to try to do is to look into the crystal ball and tell them everything's going to be okay. If they start asking me very specific medical questions, I'm going to acknowledge how scary this is to not know, and that every day children go through surgeries at this hospital and they come out with amazing strength and resilience and very full lives, because there's every reason to have hope when children go through surgery. So I'm going to give them hope. These are probably the things I would focus on, Drezden. Helping them stay grounded, helping make sure they know what their role is, they don't feel powerless, and helping them maintain hope. Because that's the way we should all feel about children with congenital heart disease when they're undergoing surgery, and teens and young adults.

Drezden: I like that, knowing their role. I'm trying to think if there's a more, you know, I'm a business bro, so I'm trying to think of a more salesy way I can say that about empowerment and taking your voice back. But no: grounded, knowing your role, and staying hopeful. And you know, we've covered a lot today, and I'm going to, we're going to have another episode where I'm going to ask you this question again when we've had a much different conversation. But something I always ask towards the end is: with everything you have found, going back from when you figured out that there was a connection between the heart and the brain, to when you started to study it, to when you found like-minded individuals, to when you became one of the experts of this field, I'm sure it has evolved and changed. In that time and now, what does CHD mean to you? What does the term congenital heart disease mean to you, given, I mean, 2007, everything you've done for it and for us in the last 20 years?

Dawn: Gosh, that's a tough question, Drezden. What does CHD mean? You know, the first word I'm going to use is truly resilience. I've worked with a lot of disease populations, and a lot of people don't know that. As a neuropsychologist in the medical setting, I worked with epilepsy, genetic disorders, brain tumors, brain injuries. You name it, I've seen it, I've worked with it. And I was so drawn to congenital heart disease for a lot of reasons. But the reason I really stick with it is because of all the resiliency and the hope. It's a beautiful balance with the risk. So that's the first thing I'll say, that CHD to me, if I was to pick my first thing, it's really resilience. The second thing is going to be a surprise, but it's that congenital heart disease means so many things as a medical provider. It is a very heterogeneous population. It's so diverse and mixed. Congenital heart disease, it could mean a very teeny tiny defect that was fixed and it means nothing else the rest of the child's life. Or it could be an extremely complex defect that required multiple surgeries and is associated with a stroke, seizures, epilepsy, a genetic disorder, the inability to talk, sensory neural hearing loss, and so on and so on. So congenital heart disease as a medical category, it means very little by itself, because it is just so heterogeneous and complex. But the population itself, the people and their lived experience, represents resilience.

Drezden: Always my favorite question to ask. I always ask it at the end because of the diverse responses that always come back to resilience. And at some point I'm going to go through every episode, chop it up and put all those definitions together, because it is, it's fun to hear. Thank you so much for taking the time.

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[OUTRO]

Drezden: And thank you all for listening. That was Dr. Dawn Ilardi. Both her cardiac neurodevelopmental practice and her new startup are linked in the show notes below. And remember: if your child is about to go through surgery, if you're about to go through surgery, feel grounded, know your role, and maintain hope. I'll talk to you all soon.