Unlocking Neurodevelopmental Breakthroughs: Impact of CHDs and Parental Influence

Unlock the latest in cardiac neurodevelopmental research with Dr. Dawn Ilardi, a distinguished clinical neuropsychologist, as we navigate the complexities of how congenital heart defects (CHDs) impact children's neurodevelopment. Discover the groundbreaking strides made by the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), a global network of over 50 institutions revolutionizing clinical care and research. Explore cutting-edge advancements in brain imaging and gain insight into the often-overlooked influences of non-cardiac factors, such as the placenta, along with the indispensable role of family involvement in enhancing developmental outcomes.

Hear a poignant story of parental vigilance that underscores the vital need for early detection and standardized imaging in pediatric cardiology. Despite the challenges faced by families with limited resources, new initiatives are bridging the gap between hospital-based care and private practice, providing essential support and education. Cultural perceptions of disabilities are also on the table, emphasizing the importance of culturally sensitive approaches tailored to diverse communities, ensuring all families receive the understanding and assistance they deserve.

Finally, we shed light on the crucial connection between parental mental health and a child's developmental journey. Understand the nuances of capturing accurate baselines in neurodevelopmental assessments for children with CHD and why repeat evaluations are essential. As we discuss the emotional rollercoaster faced by parents, we stress the value of community resources and social media groups in offering support. Join us to appreciate the profound impact of parental well-being on a child's health trajectory and learn strategies for balancing the demands of caregiving with the necessity of self-care.

Dr. Ilardi's previous "Heart to Heart with Anna" appearance: https://tinyurl.com/DawnIlardi2014

Dr. Ilardi's website: https://www.pedneurocenter.com

Dr. Ilardi's email: DawnIlardi@pedneurocenter.com

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Chapters

• 0:00 H2HwAnna Dr. Dawn Ilardi
• 13:26 Segment 2
• 25:01 Segment 3

Transcript

Unlocking Neurodevelopmental Breakthroughs: Impact of CHDs and Parental Influence

Dr. Dawn Ilardi: [00:00:00] …if you have somebody lay eyes on your child, if a child needs a consult, needs an evaluation, then you're not worrying, then you're not wondering… because the more information you have, the more you know what to do or not do. 

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski. I'm the mother of an adult with a single ventricle heart.

Anna Jaworski: That's the reason I'm the host of your program. I am delighted to talk with returning guest, Dr. Dawn Ilardi. Dr. Dawn Ilardi is a board certified clinical neuropsychologist with over 16 years of experience working with children who have neurodevelopmental disorders. After specializing in cardiac neurodevelopment at Children's Healthcare of Atlanta, she developed expertise in supporting families whose children have complex congenital heart conditions.

Anna Jaworski: As part of the Cardiac Neurodevelopmental Program and International CNOC Collaborative, [00:01:00] Dr. Ilardi has conducted extensive research on the long term neurological impacts of pediatric heart disease. She is a frequent speaker at professional conferences and family support events, sharing the latest insights to empower caregivers.

Anna Jaworski: Recognizing the vital role of families in a child's thriving, Dr. Ilardi now operates a private practice called focused on guiding parents and equipping them with personalized strategies to nurture their child's development. Through her holistic family-centered approach, she is committed to helping each child with a heart condition reach their fullest potential.

Anna Jaworski: Today we'll be talking with Dr. Dawn Ilardi about neurodevelopmental considerations regarding children with critical congenital heart defects, also known as CCHDs.

Anna Jaworski: So welcome back to "Heart to Heart with Anna," Dr. Ilardi. 

Dr. Dawn Ilardi: Thank you so much for having me here again, Anna. I fondly remember our last talk many, many years ago, [00:02:00] and I'm excited to talk to you again. 

Anna Jaworski: Well, I am too. I can't believe it's been such a long time. You were on a great episode called "Normal Child Development in Children with Complex CHD" and I'll have a link to that in the show notes because so much of what we talked about back then is still relevant today, but a lot has changed in 10 years and I would love for you to share with us some of the most important changes that you've seen in the last 10 years regarding the CHD community and the understanding of the heart brain connection.

Dr. Dawn Ilardi: Gosh, Anna, that's really hard to do in an interview, but I'm going to do my best to give you these high points, and I think one of the biggest, changes in the past decade has been the establishment of the Cardiac Neurodevelopmental Outcome Collaborative, or we call it CNOC. This is an enormous institution that started off with just a handful of centers back in [00:03:00] 2012, and it was established fully as a nonprofit in 2016, and has grown since this time to include more than 50 institutions around the world, mostly in North America.

Dr. Dawn Ilardi: The goals of these different institutions is to collaborate to improve the way we provide clinical care, and the way we do research together so we can inform future directions in both clinical care and research. So that's one really big development in the past 10 years. There's been an explosion, Anna, of research in the past 10 years, so much so that it's nearly impossible to keep up, even with a specialty within CCHD.

Dr. Dawn Ilardi: And this includes brain imaging, and other risk factors that go beyond the heart and the brain, such as the placenta. 

Anna Jaworski: Really? 

Dr. Dawn Ilardi: Yes, it's fascinating. And the role of the family is exploding. And I hope we get to talk a [00:04:00] lot about this today. And then very recently, really hot off the press in the last couple years has been a partnership with the adult CHD community.

Dr. Dawn Ilardi: So there's just so much happening. 

Anna Jaworski: I love that because when my daughter was a baby, they didn't really do anything and I remember after her second open-heart surgery, because I had studied speech pathology, I knew that she had had a stroke. She had classic stroke symptoms and I talked to the pediatric cardiologist during one of her routine visits and I said, "I think, my baby's had a stroke" and he said, "Well, what makes you think that and I said, well, her speech patterns are those of a stroke patient. She's trying to speak on an inhalation of air and she has classic symptoms. And he said, "Well, she's alive, isn't she?" 

Anna Jaworski: And I was so frustrated because. [00:05:00] I did appreciate the fact that she was alive, of course, but I guess I just expected some kind of, "Oh, well, maybe I should refer you over to neurology" or something. And that just didn't happen. But I wasn't the only one. I've talked to a lot of friends who had children, within the same time period that I did, and they didn't get any kind of assistance either.

Anna Jaworski: So, 30 years ago, the focus was on helping these kids stay alive. But now that we've had so much success in these kiddos with critical congenital heart defects, making it past those first few surgeries and living into early childhood, Then middle childhood. Now, whoa, now they're adults. That's not so scary anymore.

Anna Jaworski: And I think maybe there's a little bit more time to focus on other things that they just neglected to. Is that your experience as well? 

Dr. Dawn Ilardi: It sure is. And to speak [00:06:00] the story you just told about your daughter having a stroke. One of the passionate movements in pediatrics is to improve how we're doing standardized imaging with infants on the inpatient side at cardiac centers.

Dr. Dawn Ilardi: Because it may be surprising to you, Anna, that we're still not catching these strokes at the rate we should. And it matters. Yeah, unfortunately, and there's some complicated reasons that make sense, such as what your physician told you, which is that your child is alive and your daughter was stable.

Dr. Dawn Ilardi: And so oftentimes finding out there was a stroke doesn't necessarily change immediate care, but what it does do is it helps the family understand risk factors and potential changes in developmental course, and then the need to get early intervention. So while it may not change clinical course in the hospital, it can change the way families understand their child and so that's another movement that still has a [00:07:00] lot of room for growth and improvement.

Anna Jaworski: That's good to know because I thought things had changed. dramatically where that wasn't such an issue. I was just lucky I had a bachelor's degree in speech pathology. I did all the coursework for a master's in speech pathology, and I was a teacher of the deaf and hard of hearing. So I had lots of experience in communication skills.

Anna Jaworski: And luckily I was able to pinpoint due to her symptoms that she had a stroke in the left temporal lobe. She was so classic and because I had had those classes, to help me, I was able to do therapy with her all the time.

Anna Jaworski: I just made it fun. I made it play. And she had a brother who was three years older than her and he was the best. assistant I could have ever asked for because, of course, she wanted to do whatever Big Brother did. And that made a huge difference. But if I hadn't had that training, I don't know how she would have done. [00:08:00] Because I lived out in the country. I wasn't in Atlanta where they have tons of resources. I lived way out in the country.

Dr. Dawn Ilardi: And Anna, that's another point. And one of those areas that's exploding is understanding the role of the family. Your daughter was so lucky because you were educated and resourceful and you were paying attention and you noticed things. But so many families don't have those resources and they don't notice so another big movement is how should we be educating our families so that we can have more equitable outcomes by changing the resources and the education we have to meet the varying needs of our families. Because some families won't notice those signs and their child will leave and their child's delays won't be noticed until a teacher lays eyes.

Dr. Dawn Ilardi: So there's a lot happening and it's just a really exciting time to be in CCHD clinical and research. 

Anna Jaworski: It sounds like it. And I'm excited to see that some people are recognizing that not all parents are able to recognize or, let's [00:09:00] face it, there are also cultural differences.

Anna Jaworski: I know when I was practicing in San Antonio, because that's where I got my bachelor's degree, we had a real issue because the Latino community in San Antonio -- Folks, I'm telling my age here, that was like 40 years ago, so I'm sure things have changed. But back 40 years ago, they considered children with special needs to be little angels.

Anna Jaworski: They didn't consider it something that they needed to get help for. They felt that the child was an angel and they just needed to love the child the way the child was. 

Dr. Dawn Ilardi: Sure... 

Anna Jaworski: We had a lot of work ahead of us to educate that community -- that of course they are angels, but we can help them so they can still communicate better.

Anna Jaworski: And it was heartening to me to see some of the families come in... I was at Our Lady of the Lake and they had a sliding scale fee basis for the patient's families. Even patients, who maybe wouldn't have been [00:10:00] able to afford private practice, they could come to the university and we students would work with them.

Anna Jaworski: And the changes in those kids was just fantastic. I think that started to have a ripple effect in the community. At least I hope it did. 

Dr. Dawn Ilardi: I'm sure. Yeah, those early intervention services are just so key. So that was fantastic that they found a way to meet the needs of those who had less resources.

Anna Jaworski: And now you've gone from a hospital setting to private practice. So tell me what that's been like for you. 

Dr. Dawn Ilardi: It's been a big move. I was in the hospital setting for 16 years, Anna. So it was what I knew and I'm continuing my research as part of Emory University, but my clinical practice is now in a private practice setting, and it's now been almost a year, and I've spent this year just really trying to understand the bird's-eye view of what's happening, within CHD, but also [00:11:00] outside CHD, because we need to inform our future directions, and this has been a luxury to have this time that I never had and I've already felt the immediate rewards of being in private practice because I don't have the pressure to see a higher volume of patients and to work quickly and to limit what I do.

Dr. Dawn Ilardi: So that's been incredible, immediate improvements. But there are some things over time that I'm trying to evolve and grow Anna that I never could have done in the hospital setting. I really want to do some intervention work with families, most likely virtual and most likely individual and group work because I have a passion for the role of the family in changing children's outcomes.

Dr. Dawn Ilardi: There's a lot of research outside CCHD that shows this in the general population and in other medical conditions that we can improve outcomes by supporting families. 

Anna Jaworski: Absolutely. When I was [00:12:00] studying speech pathology, we would tell the parents when they brought their children in, "I get to communicate with your little one for half an hour or an hour" if we were lucky "once or twice a week. You're with them all day. Every day. We need for you to see what we're doing." And we had rooms that had the two-way mirrors, so that they could actually observe what we were doing to help their child produce the sounds or the words that they were working on. We always sent them home with homework as well, but the parents could observe what the clinicians were doing so that when they went home, they could see how they could attempt to help their children too. And I could always tell the children whose parents were really doing the homework with them and helping them because they improved so much faster. 

Dr. Dawn Ilardi: Yeah, exactly. Exactly. And that kind of work is just not really possible in a lot of healthcare settings. I'm working on spending a lot of time talking to parents [00:13:00] and new, developments now to also talk to adults with CHD so I can think reflectively from their experiences as children and as they have that adult mind, what would they want their parents to know?

Dr. Dawn Ilardi: I'm really excited about moving into the intervention side rather than just the assessment side and getting into the roots of my earlier career. So those are things on the forefront, Anna.

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Hearts Unite the Globe Message: Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Segment 2

Anna Jaworski: [00:14:00] Now let's get into the nitty gritty of neurological testing and what that means for the CHD community, specifically for the CCHD, the critical congenital heart defect community.

Anna Jaworski: And for those of you who are listening and haven't heard me talk about this before, CCHD patients are children who need surgery within the first year of life or else they won't survive. When I was [00:15:00] looking at some of the research that you've conducted, Dr. Ilardi, I saw reference to a tool called the Pediatric Quality of Life Inventory. Can you tell us about that tool and why it might be used on our children? 

Dr. Dawn Ilardi: Yeah, absolutely. We call this measure, the PedsQL. It's a little less of a mouthful, and this is really a screening instrument. It was developed to be used within more acute care or medical clinic type settings because it's fairly quick and easy, and it can be completed by the child or adolescent as well as a caregiver parent. There's four different subscales within the PedsQL, and that includes physical, emotional, social and school-related concerns.

Dr. Dawn Ilardi: And there's a handful of items around three to eight per scale. So it's a screening tool that's really pretty feasible across different medical clinics and it helps us get a sense of what's going [00:16:00] on from the parent and the child's perspective. But what's neat is that they've also developed a separate measure that's not just for general quality of life, but also cardiac specific.

Dr. Dawn Ilardi: So some of the specific scales, yeah, they include, heart problems and treatment-specific questions, questions about physical appearance, like scars, anxiety associated with treatment, and then some more general cognitive and communication challenges. But these are really neat measures that have been used for screening tools that have been very helpful.

Anna Jaworski: That does sound really helpful. It's good to have a baseline where, you know where the children are. I think that's one of the things that has changed too, isn't it? Aren't the babies starting to get a baseline before they go in for their first open-heart surgery and for subsequent open-heart surgeries?

Dr. Dawn Ilardi: The idea of capturing a baseline is so tricky, and it's a little counterintuitive, but first, I don't know [00:17:00] that many institutions are able to assess the babies before their first infant assessment, which tends to occur around 12 months, sometimes six months, but not usually.

Dr. Dawn Ilardi: So oftentimes, the first surgery's already occurred. But Anna, one of the tricks with a baseline assessment is that a child changes so much across development. So when we do these early assessments with infants and even toddlers and even a young preschooler, their skills are not quite stable yet. So, for example, you could have an infant or a toddler, and I'm sure you remember this from your speech therapy work, they change so much that they could be in the average range.

Dr. Dawn Ilardi: But by the time they start hitting some major transition points in development, we start to see some red flags. So, honestly, repeat assessment, as needed based on the child's risks, and individual concerns is probably more important than a good baseline. 

Anna Jaworski: Okay. Don't you [00:18:00] have to do something to determine a baseline before you start therapy so that you can measure whether or not it's been successful? 

Dr. Dawn Ilardi: That's a really great question. Yeah, and I think it depends on the therapy that's being provided.

Dr. Dawn Ilardi: So, as a speech therapist, you would start off with a comprehensive assessment of speech and language, and then you would monitor change. And oftentimes these neurodevelopmental assessments, they are typically very broad. So they tap a lot of different domains. So for example, in a school-aged child, they might look at overall cognitive abilities, or maybe even an early snapshot of IQ, and then they're going to look at maybe a snapshot of receptive expressive language, attention, emerging executive functioning skills, fine motor skills, visual processing, social, emotional, behavioral.

Anna Jaworski: I think that's something that has changed over the decades too. We're recognizing that there are so many different areas that are of critical importance.

Anna Jaworski: All the things that you just [00:19:00] mentioned are critically important to somebody living a happy, healthy life, but you can't test exhaustively every single domain, or the kid's going to be in the hospital all the time. 

Dr. Dawn Ilardi: Yeah. 

Anna Jaworski: And that's not what you want. One of the things that concerned me, since I did have some clinical experience with my child was that I didn't want to over-focus on the things that I knew needed to be ameliorated. That's why I made it fun. That's why I tried to make everything play. And I just tried to keep a mental note of what was going on and if we were making progress. I didn't make detailed notes on my child because it didn't seem like any of the professionals that I was talking to really cared. It was just up to me. But how do you all do that now? You said you take a snapshot. I remember when I was in school there was a lot of controversy [00:20:00] over how do we even measure IQ?

Anna Jaworski: And now they talk about IQ as being there's music IQ and there are other types of IQ. So what does a snapshot IQ test even look like today? 

Dr. Dawn Ilardi: Well, for IQ specifically, we definitely have some gold standard measures. I think we're pretty solid on that front in terms of consistently using psychometrically sound instruments.

Dr. Dawn Ilardi: Now, they are problematic for individuals who speak other languages or who are from outside the location that the instrument has been validated. So some of them are validated in Spanish, for example, but I think we're safer in the IQ front. I think when a child can have I'm calling it a screening, but I think these comprehensive evaluations are enough to be able to steer families into the right direction.

Dr. Dawn Ilardi: For example, they might be able to determine whether or not there is a diagnosis of autism or learning [00:21:00] disability such as dyslexia or an ADHD sometimes referred to as also ADD and the inattentive subtype. So we get a sense of these things and then the specialists they're referred to, or even the educational providers, they dive deeper into what we've just learned. It's a very collaborative process to support. It takes a village, right? To support these kids. 

Anna Jaworski: Absolutely. What's the most important discovery that's been made regarding neurodevelopmental outcomes and congenital heart disease in the last 10 years? 

Dr. Dawn Ilardi: This might surprise you, but it's the power of the family 

Anna Jaworski: That does surprise me. 

Dr. Dawn Ilardi: Yes, yes, , it did not surprise me as a psychologist because I sometimes feel like a broken record, in that we need to influence these contextual factors around development but we've spent the last several decades focusing on the importance of the surgery and the hospital [00:22:00] setting and, the brain, et cetera, but these are really not the most important predictors. In fact, in some cases, we're finding very focused variables, such as even the parents' education level or the neighborhood the child has grown up in to be stronger predictors of how the child is going to do developmentally than factors such as the congenital heart disease severity. But this is amazing because this is something that we can do something about.

Anna Jaworski: 25 years ago, I remember reading a study that was put out by CHOP where they looked at I think it was 25 HLHS families and they looked at how those children did over the years.

Anna Jaworski: And the conclusion was, oh my gosh, if you have to be born with a heart defect, you should be born with HLHS in CHOP because all those kids were doing so great. And that makes me wonder... they were all in [00:23:00] Philadelphia or near Philadelphia where they were getting all of this care from different people and it was all collaborative. I think that's what made it so powerful. The parents were aware, even over 25 years ago that, "Oh, my kid's going to need some extra help. So I'm going to have to hire a tutor" and they put them in the early childhood program. It was a no-brainer because everybody who went to that facility were told and they knew that.

Anna Jaworski: And those kids had amazing outcomes. 

Dr. Dawn Ilardi: Yep, you're right. Yes. So things like geographic region and distance to hospital and even some of the clinical practices that some of our centers are putting into place are influencing whether or not a child gets or attends a neurodevelopmental evaluation appointment.

Dr. Dawn Ilardi: And I'll give you one very specific example we've just recently discovered from our CNOC data, which is that the way a center schedules the neurodevelopmental appointment predicts whether or not they'll [00:24:00] complete it. For example, if they call and initiate the appointment with the family, the family is more likely to complete the appointment.

Dr. Dawn Ilardi: But if the family is the one that has to call, they are less likely to complete the appointment. A lot of centers are realizing, wow, this is something we can change. So this kind of stuff is really important for our future directions, as well. [00:25:00] 

Hearts Unite the Globe Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Rejoiner: You are listening to “Heart to Heart with Anna.” If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to “Heart to Heart with Anna.”

Segment 3

Anna Jaworski: Dr. Ilardi, based on the research that you've done, what are the top five common complications or postoperative indicators of children with CHDs that could signal an increased risk of future neurodevelopmental problems?

Dr. Dawn Ilardi: A lot of this research comes from multi-site work, some of it I've been involved with, but a lot of it not my work. But we are seeing some clear patterns with some of these risks and Anna, I'll expand your question just a little bit. And call them perioperative indicators of risk, because we know now that there's actually some risk factors that are occurring also before, the first surgery.

Dr. Dawn Ilardi: Those top five would be things like hospital length of stay. History of seizures and sometimes we can't even see the seizures, which is very important. A history of ECMO or a ventricular [00:26:00] assist device-- that heart and lung bypass is the ECMO, any kind of history of cardiac arrest, or coding and then some surgical factors like how long did we delay before the surgery happened things like number of surgery and complexity of surgery. So I would say these are the top perioperative risk factors that are influencing neurodevelopmental outcomes right now.

Anna Jaworski: Wow. All of that makes so much sense. It does. It makes a lot of sense. And some of those things we have a little bit more control over today than we did before. I know as far as the actual timing of the surgeries, For a long time, the thought was, 'Oh, let's put it off as long as we can and have the child get as big as possible.

Anna Jaworski: And then they decided, Oh, no, that's not so good because they're living with lower saturation levels potentially, or that could increase their opportunities to have a stroke or [00:27:00] some other problem. And then they went the other way and started doing the surgeries earlier. And it does seem that things like that are very cyclical, don't you think?

Dr. Dawn Ilardi: Yes, and right now, this is a hot area of research, and, as you can imagine, they're going to need to dive into surgery-specific groups, right? Because, for example, TGA versus Tetralogy of Fallot versus Hypoplastic Left Heart. They have very different surgical courses. So, yes, timing of surgery seems to matter.

Dr. Dawn Ilardi: At least some initial data is showing this. More significantly for some versus others, but this is something that's very important because it seems to be a critical factor. 

Anna Jaworski: You went into private practice to specifically help parents of children with CCHDs. What's the best advice you can offer a parent of a baby with a CCHD to maximize their child's potential?

Dr. Dawn Ilardi: I guess I could narrow this down to a couple, but [00:28:00] I would just love to have an hour conversation with every family to tailor this. If I was forced into a couple, the first would really be to take care of yourself as a parent because we're seeing a lot of post-traumatic stress, a lot of anxiety and depression and overwhelm in families and parents are the lifeline.

Dr. Dawn Ilardi: Parents are the ones that are going to open doors and advocate and see their child. , my first piece of advice for any parents, family members, and that includes, honestly, the extended family and even any other adult members supporting is to take care of your own mental health and social relationships.

Dr. Dawn Ilardi: The second would be don't ignore and delay when you see early signs of concerns in your child. Because a lot of families have some anxiety and they have some post-traumatic stress from their very difficult early developmental course, [00:29:00] they reasonably, can over-protect or, do too much for their child and sometimes it's so hard to look at the thing that's worrying them, to face it head on, to accept that it's there and to start to get support. But we know that when a child is delayed in getting access to services, it leads to a crumbling foundation that's hard to build upon as they get older.

Anna Jaworski: Yeah, that makes sense. I think it's. One of those parents, I had a child who had two open-heart surgeries in the first year of life. One of the big problems I had with taking care of my own mental health was that my child's pediatric cardiologist told me my baby was a ticking time bomb. And that even if my baby were in the hospital, she could throw a clot and they wouldn't be able to do anything to help her and she would die. So I never felt comfortable leaving my [00:30:00] baby with a babysitter, especially my mother, because I thought if my baby died while in my mother's care, she would never forgive herself and it wouldn't have been her fault, but I just didn't ever even want to put her in that position.

Anna Jaworski: My child was four years old before my husband and I had a babysitter and that was an advanced practice care nurse who was in the same graduate program my husband was in. So I knew she had ACLS skills and I had brought her up to speed on what was going on with my four-year-old and my child was very stable, but I think it's hard for us parents to get that alone time or get that mental break because we're very stressed knowing that we have a child who could die. 

Dr. Dawn Ilardi: Yeah. 

Anna Jaworski: We could be doing everything right, but it doesn't matter because if a little blood clot goes in the wrong place, our baby could die.

Anna Jaworski: know for me, I [00:31:00] probably could have done a lot better job taking care of my own mental health, but I didn't feel comfortable leaving my baby with anybody. 

Dr. Dawn Ilardi: And maybe that was the right thing, Anna. Maybe what you needed to do to take care of your mental health was to be the primary care provider for an extended period of time, I think that it would be impossible to tell a parent who fears for their child's life to separate more frequently or to build trust in caregivers that aren't familiar. I think that it has to be a tailored approach to figure out how can you care for yourself. What are going to be your priorities? And maybe it's simply making sure you're sleeping okay, and you're eating, and you're using your positive social relationships during that time when you're building up a sense of security that you can trust that your daughter's going to be okay. 

Anna Jaworski: I appreciate you saying that because I think is so easy to feel guilty for things that [00:32:00] happened in the past and you can't go back and change it. There's really no point in feeling guilty about it.

Anna Jaworski: I'm so lucky my daughter's 30 years old. She has beaten the odds and things have turned out okay. I'd like to think I'm okay. I mean, do PTSD? Absolutely. No question about it. There are certain things that can trigger me and walking in hospitals, certain smells will certainly trigger me and seeing certain things will definitely take me back so rapidly it's amazing. But I also know that through writing my books and talking to other parents and putting out this podcast... all of that has been therapy for me. It has helped me to come to grips with what has happened and I appreciate so greatly the fact that you feel that parents attending to their own mental health can help their children because then that takes away some of the guilt of, 'Oh, I'm going to see a [00:33:00] therapist' or 'I'm going to a baseball game' or "I have a date with my spouse.' Those kinds of things, we almost need a prescription for it. It's almost like we need somebody to say it's okay to have fun.

Dr. Dawn Ilardi: I agree. And I hope that we get to the point where our multidisciplinary teams are having these conversations because the way we talk to parents about their child's risks is going to influence how they're able to take care of themselves. 

Anna Jaworski: Right. Okay. That was one thing...

Dr. Dawn Ilardi: ...and the second one was not to ignore their early signs of concerns and just make sure that they get the help that they need, talking to their medical team and finding resources in their community to make sure that they got what they needed. 

Anna Jaworski: I have a question about that, because I remember writing an article a long time ago about this.

Anna Jaworski: When you get those books, "What to Expect When You're Expecting" or "What to Expect the First Year." A lot of those milestones don't really [00:34:00] apply to our children in that way because our children have been on paralyzing drugs and our children have had their chests cut open. They aren't receiving the same input that a child who doesn't have a CHD gets, and they don't have those consecutive days of being able to explore their world unimpeded by machines being hooked up to them, so I always, felt that it was important to subtract the days in the hospital and to subtract as normal recovery time from that normative data. Do you think that contributes to the confusion of when should we seek help? 

Dr. Dawn Ilardi: I do. Yes. And in fact, there's a really interesting research project coming out right now from CNOC, where we hope to have some parallel norms.

Dr. Dawn Ilardi: Not only will we compare infants and toddlers to the normative population to look at their delays, but we'll also [00:35:00] compare them to children with CHD. But I'll add this, Anna, that's the great thing about getting your child evaluated because as I've followed kids over the last decade, I can actually look at their last evaluation and see, 'Oh, wow! You have made progress. It may look like your score is stable, but you have actually made progress in whatever, area we're monitoring. Sometimes using your child's individual trajectory is more meaningful for recommendations than whether or not I compare the child to a CHD population or to the normative population. 

Anna Jaworski: I love that. 

Dr. Dawn Ilardi: But I'll also just add quickly too if you have concerns, it never hurts to just start asking, rather than just holding them inside. Because my experience is that those worries, they don't go away. You'll rationalize them and you'll worry about them. But if you have somebody lay eyes on your child, if a child, [00:36:00] needs a consult, needs an evaluation, then you're not worrying, then you're not wondering because the more information you have, the more you know what to do or not do.

Anna Jaworski: That is one thing that I feel these Facebook groups. are so good for. I belong to way too many Facebook groups, and I pop in and out of them periodically. But that's one of the things that I'm so proud of the parents in those groups. So many times I'll see somebody say, "I'm a little worried about this," and they'll explain what the situation is.

Anna Jaworski: And within five minutes, five or 10 parents have said, "Oh, my kid did X, Y or Z. If you have that question, you should talk to..." and they help them to know the name of the specialist that they should consult, or "You should ask your pediatrician to give you a consult to..." Those things weren't happening 30 years ago, and parents are much more [00:37:00] savvy consumers and they know who they can see or who they can request to see.

Anna Jaworski: But I think one of the frustrations is that there can be really long wait lists to actually have your child see somebody. Do you have any suggestion on something that can be done if, "Yeah, you can see somebody, but it's not going to be for six or nine months." 

Dr. Dawn Ilardi: Gosh, I don't, we have a provider shortage across every single area of behavioral health: psychology, counseling, neuropsychology, psychiatry.

Dr. Dawn Ilardi: We have a shortage of providers and Anna, this has been a problem for decades, beginning before the 1960s. This is just our reality and it's really unfair. So I would say that if you have a provider you want to work with, then I would get on that waiting list, and if you can explore other providers who have similar expertise in your area outside institutions, sometimes that works, but sometimes it [00:38:00] doesn't. It's not fair, but it's a reality we all face. 

Anna Jaworski: It is. Do you think that the internet is helping in this regard? Because now I'm seeing that people can get counselors on the internet. And maybe even somebody in a different state who happens to have licensure across state lines. 

Dr. Dawn Ilardi: I think that the Internet is creating a new set of opportunities, but also challenges. It does increase accessibility.

Dr. Dawn Ilardi: So if you wanted to see somebody who has the ability to practice across state lines, and they have openings, then yes. That opens up the possibility for you to get services you would have otherwise not been able to get. But because of increased accessibility, it's also made it easier for people to skip some traditional steps in gaining the experience, gaining the credentials, gaining the knowledge they need to be able to be a solid provider. Sometimes I worry that more doesn't [00:39:00] necessarily mean that we have more competent, trusted providers. That's something I worry about is that higher volume doesn't necessarily equate with equal quality. 

Anna Jaworski: So, how do you know if somebody is going to be qualified to work with your child? 

Dr. Dawn Ilardi: I would definitely want to read about their training. That's what I recommend that parents do when they're seeking out a specialist. We all have websites now. If you're part of an institution, you can assume this person has been vetted because there's a very strict credentialing process when you become part of an institution. But in people that are in private practices, you really need to know what their background is. For example, just because they're a therapist or a doctor, what did they study? Where did they study? Did they work with children similar to your child? That's probably the safest and easiest way. Sometimes patient [00:40:00] reports about the therapist or the provider can be helpful.

Dr. Dawn Ilardi: But unfortunately, you don't really know the original source of these. 

Anna Jaworski: You see these different websites now where they're rating the doctors. And unfortunately, I think you usually get the extremes only-- people who absolutely love the doctor or people who absolutely hate the doctor. 

Dr. Dawn Ilardi: If you do your due diligence and you do the research and you try to understand the provider before you commit at least to one appointment. The bottom line is if you don't feel comfortable with that provider and you don't feel that you can trust and talk and you don't see change occurring in a way that's meaningful, then it's time to move on.

Dr. Dawn Ilardi: It's time to find a new provider that's a better match. That's the power every family and every patient has is to make a choice about who you work with. 

Anna Jaworski: I love it. I know people are going to be wanting to know more about you. So can you tell us how they could [00:41:00] contact you, especially if they're in the Atlanta area?

Dr. Dawn Ilardi: Yeah. Anybody can email me directly. You can put my email in the show notes or my website if you'd like. I'm in the process of getting licensed, through PSYPACT, which will allow me to practice across, most of the states in the U. S. So I can do more consultations outside the state. So that'll be coming in the next couple months. But the other thing I could help guide families towards, if there is a local cardiac follow-up program near them or a local psychologist or neuropsychologist who specializes with congenital heart disease, I'm happy to guide families in those directions as well.

Anna Jaworski: Oh, that's wonderful. So yes, friends, I will make sure that we have Dr. Ilardi's website and her email address. She's willing to take emails from concerned parents and adults with CHD. I think that's wonderful. I can't believe that we're already out of time. Where did the time go, Dr. Ilardi? 

Dr. Dawn Ilardi: It did go fast 

Anna Jaworski: Thank you [00:42:00] so much for coming on the program today. I feel like I've learned so much from you. 

Dr. Dawn Ilardi: Me too, Anna. I love these conversations and I look forward to another conversation in the future or hopefully an email from one of your listeners. This is really a true passion of mine. 

Anna Jaworski: Yes, it comes through very clearly that you're passionate about this and I love that about you.

Anna Jaworski: It's been such a joy to touch base with you again and see how much you've done. When I was looking through the literature. Oh my goodness, I was so impressed with everything that you have been doing in the last 10 years. Thank you so much for working to help children like my daughter, who was born with a special heart to see what we can do to make her future the best it can be.

Dr. Dawn Ilardi: You're welcome. And thank you, Anna. 

Anna Jaworski: That does conclude this episode of Heart to Heart with Anna. Thanks for listening today, my friends. If you found today's show helpful, please consider becoming a patron or a supporter of the podcast. For the cost of a cup of coffee [00:43:00] once a month, you can help us continue to provide free programming to the CHD community.

Anna Jaworski: Thanks so much for listening. Check out our website, heartsunitetheglobe.org to be a supporter. And remember, my friends, you are not alone.

Conclusion: Thank you again for joining us this week. We hope you have become inspired and empowered to become and advocate for the congenital heart community. “Heart to Heart with Anna,” with your host Anna Jaworski can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern Time.

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