A Parent’s Guide To CHD, Neurodevelopment, And Resilience

What if the most powerful lever for your child’s growth isn’t another appointment, but how you care for yourself? We sit down with neuropsychologist Dr. Dawn Ilardi to connect the dots between CHD, early brain development, medical trauma, and the everyday choices that help families thrive. From prenatal influences on cognition and behavior to the protective force of stable routines and responsive parenting, we translate research into practical moves you can make this week.

We explore why CHD outcomes are shaped long before surgery and how heterogeneity makes each child unique, yet still able to benefit from adapted tools used in the general population. Dr. Ilardi explains how family factors—predictable structure, warm communication, and realistic challenges—can buffer stress and build resilience. We also address the quiet weight of medical trauma for parents and teens, outlining small, affordable supports like gratitude journaling, micro‑breaks, and CHD‑savvy counseling, alongside the healing power of honest community.

You’ll also hear about a new resource: Parenting Kids with CHD, an on‑demand library of short videos and monthly live Q&A designed to bridge the gap between science and everyday life. Topics range from ADHD meds and evaluation paths to tackling anxiety, early language delays, and transition to adult care. As Anna announces a writing hiatus, we highlight where to find archives and why the broader HUG network continues to amplify CHD stories and support.

Subscribe for more conversations that blend empathy and evidence. If this episode helped you feel seen—or gave you one concrete tool to try—share it with a friend, leave a review, and tell us the next question you want answered.

Dr. Ilardi’s other episodes:

Season 1: What is Normal Child Development in Children with Complex CHD? https://www.buzzsprout.com/62761/episodes/852321

Season 19: Unlocking Neurodevelopmental Breakthroughs: Impact of CHDs and Parental Influence https://www.buzzsprout.com/62761/episodes/15872291

Season 20: When Hearts and Minds Unite: Navigating Neurodevelopment in CHD https://www.buzzsprout.com/62761/episodes/16895529

Dr. Ilardi’s blog: https://pedneurocenter.com/author/dilardi/

Join the waitlist for the Parenting Kids with CHD: https://pedneurocenter.com/parenting-kids-with-chd/

The news article I mentioned at the top of the episode (Neurodevelopment in Congenital Heart Disease: A Review of Antenatal Mechanisms and Therapeutic Potentials): https://www.nature.com/articles/s41390-025-04360-y

Chapters

• 0:00 Introduction and Welcome
• 0:50 Heartfelt Holiday Wishes and Personal Announcement
• 2:34 CHD News: Neurodevelopment and Congenital Heart Disease
• 4:28 Introducing Dr. Dawn Ilardi
• 5:54 Dr. Ilardi's Work with the Adult CHD Community
• 7:23 Challenges and Variability in CHD
• 8:28 Parenting Kids with CHD: New Online Program
• 12:41 The Importance of Family-Centered Care
• 15:20 Supporting Parents and Families
• 33:59 The Power of Resilience and Love
• 41:03 Conclusion and Farewell

Transcript

A Parent’s Guide To CHD, Neurodevelopment, And Resilience

Dawn Ilardi: [00:00:00] ...as parents, when we take care of ourselves, we can really see our children and what they need from us, and that doesn't just include finding resources to support their weaknesses. It also means finding those gifts that we can nurture and challenge. 

Anna Jaworski: Hi, friends, and welcome to Heart to Heart with Anna. I am Anna Jaworski and a heart mother to Hope, my 31-year-old amazing daughter. Today's episode is an important and timely conversation, one that touches on neurodevelopment, family resilience, medical trauma, and the lifelong journey of congenital heart disease.

I'm grateful you're here, and I'm looking forward to sharing this conversation with you. Before we begin today's episode, I want to take a moment to wish all of you "happy holidays," however you celebrate and wherever you may be listening from. [00:01:00] This season, can hold so many emotions all at once: joy, reflection, gratitude, grief, and sometimes a mixture of all of them.

I know that's especially true for families living with congenital heart disease. I also want to share something personal with you. After a great deal of thought, I've decided to take a hiatus from Heart to Heart with Anna. This is the first time in 12 years that I'm stepping back without a defined end date, and I want to be open about why I am doing it. I'm deeply immersed in writing right now, working on books that have been asking for my full attention.

In order to do that work well, I need to create space for focus and reflection. This pause is not about burnout or walking away. It's about honoring the season I'm in and the work I'm being called to do. What I want to be very clear about is this, I am not stepping away from Hearts Unite the Globe. I will continue to [00:02:00] serve as executive producer for our podcasts, including the CHC Podcast, which will relaunch in 2026 under a new name Congenital Heart Chronicles: Sharing CHD Stories, as well as Bereaved But Still Me, and Guerreros Del Corazon.

This community, these stories and this work continue to matter deeply to me. Thank you for allowing me the space to step back while still remaining connected to the mission we share.

CHD News

Anna Jaworski: For today's CHD News, I want to share highlights from a recently published review in the journal Pediatric Research that focuses on neurodevelopment and congenital heart disease. This review looks at how congenital heart disease can affect brain development even before birth. As medical advances allow more babies with complex CHD to survive and thrive, [00:03:00] researchers are paying closer attention to long-term neurodevelopmental outcomes, including motor skills, learning, behavior, and cognition.

The article highlights several prenatal factors that may influence brain development in CHD, including altered blood flow, and oxygen delivery to the brain, placental differences that are more common in CHD pregnancies, maternal stress and inflammation, and shared genetic pathways that affect both heart and brain development.

One of the key takeaways is that neurodevelopmental challenges associated with CHD are often multifactorial and begin very early, long before surgery or intensive care. Understanding these influences may help guide earlier monitoring, family education, and future interventions aimed at improving long-term quality of life.

If you'd [00:04:00] like to read the entire article, it's available for free online. I'll include a link in the show notes.

HUG 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 Heart Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Segment 2

HUG Disclaimer: Dr. Dawn Ilardi is a neuropsychologist who combines clinical expertise with a strong research background in patient outcomes.

She has worked in hospitals, community clinics, and private practice. Translating evidence-based findings into practical strategies that help families support children's emotional wellbeing and neurodevelopment. Through her private practice, she provides accessible care and develops resources that extend beyond the therapy room, including a widely read, informative [00:05:00] blog and new on-demand tools for parents of children with congenital heart disease.

My loyal listeners will remember Dr. Ilardi from Previous Heart to Heart with Anna episodes where she shared insights on topics such as neurodevelopment in children with CHD, and strategies to reduce family stress. Her thoughtful guidance and practical advice have made those episodes extremely valuable.

I'm delighted to welcome her back today to continue that important conversation. So welcome back to Heart to Heart with Anna, Dr. Ilardi. 

Dawn Ilardi: Thank you so much for having me, Anna. I love talking to you. All your experiences just bring such wealth and depth of meaning to our conversation. So thank you for having me back.

Anna Jaworski: Oh, thank you for saying that. We haven't talked since springtime, and I know a lot has happened for you. So tell me what you've been working on. 

Dawn Ilardi: Two things Anna, I would love to talk to you about. First is that I've gotten more and more involved with the adult CHD community, and [00:06:00] this has been through some research that's been growing and some efforts around the country to try to build new opportunities for psychosocial supports and interventions and collaborations and growing research to improve outcomes and access to opportunities and knowledge in the adult community.

And that's been really exciting, Anna, because I've been in the pediatric community for so long, but saw my young adults growing out of the pediatric system. It's nice to now start to see those bridges forming between pediatrics and adults, so that's been something that's started off and has been really fruitful for me.

Anna Jaworski: It has been exciting to see how many of our young adults with congenital heart defects are growing past young adulthood. My daughter turned 31 this summer, Dawn.

Dawn Ilardi: Wow. 

Anna Jaworski: It doesn't seem possible. 

Dawn Ilardi: Yes. 

Anna Jaworski: And she's one of a cohort of a lot of people. The number of people I am [00:07:00] meeting now who are in their thirties and even forties, and at SV ONE, I met somebody in their fifties with a Fontan heart. Oh, my gosh!

That just made me feel so good, Dawn. But we're seeing new problems as they age. 

Dawn Ilardi: Yes. New problems and new priorities for how we should be preparing for adulthood in pediatrics. 

Anna Jaworski: Yes. 

Dawn Ilardi: And all along, Anna, I've always been struck by this... what we know within the silos of science and behind our desk as clinical providers, what we know in those spheres versus what's really trickling out to parents and young adults.

And along the continuum from infants all the way up to young adulthood, we need to close this gap and make it easier for our families, our children, and our adults to know how to seek resources to understand the things that feel different to [00:08:00] them and this has led me to think about building this new program that I'd also love to talk to you about, called Parenting Kids with CHD, and this is going to be a new online program I'm creating. 

Anna Jaworski: Yes. You started to tell me about that in an email, so now you have to tell me all about it because all I know is the title of it, which sounds amazing. And then I went out to your website and I saw some of your blog posts and wow, you have so much information out there.

So tell me what inspired you to start Parenting Kids with CHD. 

Dawn Ilardi: It is really because it's very difficult for science to be communicated in clear, practical, real-life terms to patients and families. Oftentimes this information sits in these research journals and sometimes it filters down to a clinical provider so that they can communicate it in the office with the parent or the [00:09:00] patient, but it just doesn't get distributed widely enough and there's so much to teach. So really this has helped inspire me. Basically, Anna, I just want to open up the doors to what's happening in science and in clinical offices around the country with regard to how to support families and patients with congenital heart disease, what they could be doing to access more resources and knowledge.

Anna Jaworski: I think one of the things that's really hard right now is the way information is being gathered... there is an explosion of information. I don't see how anyone can be a generalist anymore because there's so much knowledge. It's almost like people have to specialize in order to feel like they're intelligent about a certain subject. Doesn't it feel that way to you? 

Dawn Ilardi: It does, absolutely. The more nuanced [00:10:00] you get, the deeper you get into that area of specialty, and you can make it more relatable to each family. But it's such a struggle. I'm going to be honest, in congenital heart disease, Anna, because even though there's a lot that unites and there's a lot of commonalities in CHD, it is such a heterogeneous population, meaning there's so many variations whether it's with regard to the heart and the structure and the defects that go along with that, but also in how they grow and develop and the things they either do or don't struggle with.

Anna Jaworski: Yeah. Like in my daughter's case, she had a stroke with her second operation. That's not uncommon, but when children have that second operation is variable. And like you said, even if you had only Fontan patients, there's so much variability just in the single ventricle world.

It is hard. I can't even imagine how many variations you must deal with. The longer a [00:11:00] child is intubated... that can cause certain problems. So longer children are on feeding tubes, and especially if they have oral aversions. There are so many different things that can play into having issues that you would see in the clinic.

Dawn Ilardi: Absolutely. The one thing that's probably also a surprise is that while the CHD population is unique, even with all its heterogeneity and variability, there are some things that are quite similar to the general population, but yet we as providers sometimes don't do a very good job of bringing that in and either using it or finding ways to use it to inform CHD families or adapting that information that's already existing, is already research supported. So that it is more applicable to CHD. So we have the variability within CHD, but there's so much out there beyond that in the general population that we could be doing a better job [00:12:00] accessing, Anna. 

Anna Jaworski: So talk to me about how you discover what research findings you feel would be most useful for you and for parents.

Dawn Ilardi: Usually it's the stuff that's modifiable. It's the things that are practical that are related to everyday life because there is so much great research out there that could inform a parent across the developmental continuum about what they could be doing to support their child's development.

So usually the research that's most applicable is directly related to parents and what they can do for their kids. This is the kind of information I want to share with them. 

Anna Jaworski: The nice thing is, especially in the last 10 years, it seems that more of the big centers are practicing family-centered care. It's not just about the doctors anymore. They're actually bringing the whole family, even the siblings into the practice [00:13:00] because they see that by having everybody involved, we have a better outcome. 

Dawn Ilardi: That's absolutely right and that's what's so inspiring to me and has been a huge part of wanting to create parenting kids with CHD because we know that parents and families are often the strongest predictors for outcomes.

And while you can't do research with a single child or a single family and publish those findings, what we find is those family-related variables are what's explaining outcomes. It's not necessarily things like strokes or length of intubation. Those things do matter and they do increase the risk, potentially, but at the same time, it seems that family factors are strong protections. So we need to be focusing on families. We need to include them in intervention and in our research, Anna. 

Anna Jaworski: Yes, and I think that would be really challenging. One of the things that I noticed when I was studying speech [00:14:00] pathology in college was that because there is so much variability, it's hard to get a control group. I always felt like we were comparing apples and oranges when we were looking at our students. think that makes it a little bit more challenging to get statistically significant research, whereas you can definitely provide case studies and get some valid information, but how do you get more information unless you're going to do multi-center studies?

That seems to me like the only way you'd be able to have enough people who are similar enough that you could draw any kind of conclusion. 

Dawn Ilardi: It's such a balance. I'm still involved in a number of multi-site studies in the country and beyond. It's tricky because as you grow your sample and you include more sites, unfortunately it does water down a lot of the things you can actually measure very systematically.

Anna Jaworski: Yeah. 

Dawn Ilardi: And in addition, Anna, it makes it harder [00:15:00] sometimes to use these massive studies to generalize to a single child or family... 

Anna Jaworski: sure 

Dawn Ilardi: that's sitting in my office. 

Anna Jaworski: Mm-hmm. 

Dawn Ilardi: So that's why we really have to balance what's clinically meaningful and what makes sense based on our clinical experience, one-on-one to what we know from that research.

Anna Jaworski: Yeah, I love that. So tell me, has there been a moment in your career that fundamentally changed how you saw the emotional needs of families facing CHD? 

Dawn Ilardi: I wish I could say it was just one, because that would mean it was really clear. But no, Anna, it was hundreds of small moments across time. It was listening to the pain and the joy and the resilience from families and kids and teens one-on-one in my office. It was also listening to the pain points and seeing them in the healthcare institution and system. It's seeing the problems with accessing [00:16:00] services. There are so many things that accumulate across time that tell a story from these tiny moments.

And each of them matter because 

they came together to build a pattern for what we needed to do next.

HUG Messasge: 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 www .Congenital heart defects.com for information about CHD, the hospitals that treat children with CHD summer camps for CHD survivors and much, much more.

Baby Hearts Press: Embark on a heartwarming odyssey with Baby Heart's Press--your gateway to uplifting stories [00:17:00] for the CHD community. Introducing The Heart of a Heart Warrior book series. Inspiring those born with heart defect and their loved ones. Discover The Heart of a Mother, The Heart of a Father, and My Brother Needs an Operation.

Books celebrating strength, love, and familial support. Visit BabyHeartsPress.com and be part of our loving community uplifting hearts. One story at a time.

Speaker 3: 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 at Heart to heart with anna.com. That's Anna at heart to heart with anna.com. Now back to heart. To heart with Anna.

Anna Jaworski: Dawn, can you share a memorable family experience that sparked your desire to create broader support for parents navigating similar challenges?

Dawn Ilardi: I think a [00:18:00] couple things stand out, Anna and it's always tricky for me to share a personal experience because I'm always trying to protect the stories of individuals since I don't always have permission to share those stories. But I'm going to tell you two things. The first is that I repeatedly heard heartbreaking stories from families about how long it took them to understand what was going on with their child... about how they wondered if it was related to the heart, but they just didn't know.

And they would talk to the providers in their life, but they just couldn't get a clear sense of what to do. And the thought that after all these decades of accumulating knowledge, that it was still a problem for families to get what they needed in a timely fashion so they could get the support and resources for their child.

 It was just so frustrating for me, and it broke my heart because each time I thought to myself, 'How can [00:19:00] it be the case that families still don't understand the relationship between the heart and their child's development?' So this was one common pattern. The second one, Anna, that was always so memorable and it dug deep into my soul, were experiences around medical trauma.

And very stressful medical experiences that affected parents and kids and teenagers. And now I'm hearing more from young adults with CHD .This medical trauma comes from a place sometimes where there are preventable or possible changes that we can all be making on the healthcare side, but also the parents in terms of just understanding what they can do.

There's these two patterns where I want families to understand the knowledge that they can use to support neurodevelopment earlier without having to rely on [00:20:00] these one-on-one occasional meetings and then second--ways to reduce the risks and the stress around medical experiences. 

Anna Jaworski: I love that. I love that you are aware of that and that had such a profound effect on you.

Dawn Ilardi: The other thing that I'm very passionate about is what parents are experiencing. In the pediatric system, Anna, we focus predominantly on the child's experience, obviously, because the child or the teen, or the young adult and the pediatric system is the patient. 

Anna Jaworski: Right.

Dawn Ilardi: We're not always thinking about the parent or the siblings who are observing the before, the during, and the after of the medical experiences, the appointments, the surgeries. And the other thing that's very sneaky about medical trauma is that it doesn't always present right away, and it doesn't always present in the form of PTSD or post-traumatic [00:21:00] stress disorder or post-traumatic stress symptoms.

So many parents are holding this inside. And I've seen a lot of tears over the years as they retell their story of trauma from the time of diagnosis through hospitalizations and terrifying moments like when your daughter had her stroke. These things can lead parents to not be able to be the parent they want to be because they're holding this pain.

So this is the other thing that I feel very passionate about is parents need support because they're living this journey alongside their child. 

Anna Jaworski: You're so right and I think if we had more support, we could do more for our children. I think there's a lot of time spent feeling guilty, wondering if you could have done something different when you were pregnant or afterwards if you see problems.

Did you wait too late before you said something? Did you ask the right person? [00:22:00] Should you have gone to a different hospital? There are so many different ways we parents second guess ourselves. I don't feel like I got much support at all. I really didn't but my daughter is alive, so of course I am immeasurably thrilled that I happened to find the right people because I think it was God-driven.

We got really lucky that we were in the places that we were at the time we were, but I really didn't feel that I had the support that could have made me less anxious, less depressed at times. Again, I'm lucky that my husband is a nurse. We had good health insurance. I was able to go to counseling when I needed to, but I have friends who were reluctant to go to counseling. I know people who, just couldn't handle the stress, Dawn, and their marriages didn't survive, and it's heartbreaking. 

Dawn Ilardi: It is heartbreaking. The tricky thing is that so many families [00:23:00] are juggling so much, Anna, that going to counseling is not an option for them. Whether it's a financial strain or... 

Anna Jaworski: Sure. 

Dawn Ilardi: ...it's fear of counseling or stigma, time or just juggling hundreds of things.

So there is no perfect solution. It has to be a problem that you solve, figuring out how do you get the support you need one by one. 

Anna Jaworski: Mm-hmm. 

Dawn Ilardi: But I think the most important thing that every parent needs to hear is that the hundreds of different complicated emotions that you feel from grief to guilt, to loss, to shame, anxiety, fear, frustration, anger, and also joy. It's all supposed to be there. It's a normal part of the process. There are things that you can do to be able to support yourself at the same time also being the parent you [00:24:00] want to be. It's just so difficult. 

Anna Jaworski: It is, but I think it's less difficult today than it was 30 years ago. Because 30 years ago I didn't even have internet. That makes me feel really ancient. Dawn. 

Dawn Ilardi: Yeah. 

Anna Jaworski: But when my daughter was two, so 29 years ago, we got internet and that opened up a whole new world for me. Just being able to get online and to be able to talk to other people. Now there are camps that even parents can go to, which is amazing. It's another way for us to reach out to heart families, families that really get what we're going through because as much as we love our extended families, a lot of them don't really understand and they just want to be reassured. They just want to be told that everything's going to be fine.

They don't want to hear that there's another surgery coming or that we may need a pacemaker or we may be on a transplant list. [00:25:00] It's very traumatizing for our extended families, so it prevents us from being able to share with our parents, with our siblings, with our cousins. It just prevents us from openly sharing...

Dawn Ilardi: mm-hmm 

Anna Jaworski: ...as much as we might need to. But finding another heart family, you can express those concerns and they understand. They're coming from the same position you are. It really does help a lot. I don't know what I would've done when Hope was really young, if I wouldn't have had just a handful of families who really got me. It makes you form such a tremendous bond, Dawn, that next month, my husband and I are traveling to France to spend time with another family that we met online. Yeah. 29 years ago. Wow. 

Dawn Ilardi: Wow. 

Anna Jaworski: We're still friends. And I think our friendship is much deeper because over the years we've watched our children grow up [00:26:00] together. One's at England or one's at Texas, so we're not anywhere close. Our children have never met, but we have met with the mother and father in the past. When Frank and I traveled to England, we actually met with them and now we're going just to be with the parents. But it does form such a strong bond. And I think if every parent who has a kid with a heart condition, cerebral palsy, Down syndrome, any of those conditions that are not mainstream if they could meet somebody else who is going through what they're going through, it can make a tremendous difference.

Dawn Ilardi: I'm so glad you said that because I agree with you wholeheartedly, and the research shows it too. Social connection... it's critical, and this is really one of the gifts that we've gotten from an increased use of technology... the ability to connect; you're exactly right. Decades ago, we didn't have this, you couldn't find another [00:27:00] CHD family maybe unless they were in your hospital or your neighborhood or your community, but now the networks are exploding and there are more ways to connect. And I think that this opportunity-- just like it did for you-- may be the lifeline for a lot of families and it's not necessarily going to be counseling. It's going to be finding their village of people who understand the lived experience. And podcasts just like this one are doing that; you're helping families to feel that they're not alone and their stories and emotions and stressors are all shared.

Anna Jaworski: We cry together; we laugh together; we celebrate together. And I pray for a lot of people all over the world, definitely. I think that does make a big difference. Absolutely. But I wouldn't downplay the importance of counseling because for me, that really helped a lot. And now we're so lucky. There are programs like the Ollie Hinkle Heart Foundation has Ollie's [00:28:00] Branch...

Dawn Ilardi: Yes. 

Anna Jaworski: ...Where they provide therapy to families like mine, so they really get it. You're not going to just any counselor. You're going to a counselor who understands the CHD condition, and I think that makes a big difference too. I love it that you are aware of the need for the parents also to have some help. What advice would you give parents to help them to be better advocates when they are in that healthcare setting. 

Dawn Ilardi: The first piece of advice before the advocacy would really actually be self-care.

Finding ways to take care of yourself. There was this poster that was presented at a recent conference called CNOC, and some parents did a report about the things that they regretted when they reflected back. One of the things they regretted the most was not taking care of themselves.

This is not a simple thing to do, and sometimes it [00:29:00] comes in tiny little bites, like taking a longer shower than you thought you should or taking a quick walk to go get coffee at the hospital because you need a break or making a phone call that you didn't think you should make, et cetera. Or sometimes it's things like what you mentioned, like going to counseling or finding a group where you connect or a book club.

But that self-care is really huge and it allows you to be a better advocate for your child so that you can clearly see how to balance what's needed for both your child and yourself so that you can be the oxygen, the anchor, the compass for all that's ahead for your child. 

Anna Jaworski: I think that's brilliant. I am totally guilty of not practicing good self-care. Even with Joey, my child, who is heart healthy, it took me a long time to get pregnant. And to have a successful pregnancy. So when my child was born, I was [00:30:00] 28, which back then seemed really old. Now I realize it wasn't as old as what I felt it was.

Dawn Ilardi: Not at all. 

Anna Jaworski: But when I had a child, I stopped working. I stayed home with my baby and everything in the universe revolved around my baby. To have a child three years later that had such a significant issue... then I had two children. So I was already not good at taking care of myself, in some ways, but add another child to it and yeah, I would have to say that would probably be something that I was guilty of as well. 

Dawn Ilardi: It's natural to allow the full-time nurturer to take over and especially when you have a medically fragile child or a child with any kind of developmental differences, it's absolutely natural. This is a pattern I think we would all struggle to balance.

Anna Jaworski: I think you're wise to say that is something that we [00:31:00] need to be aware of, but it's funny because when I took my child to the pediatrician after the diagnosis and after the first surgery, she said to me, "Now you and your husband need to have a date once a week." And I remember thinking, 'She doesn't get it' because there was nobody I could leave my baby with.

Dawn Ilardi: Mm-hmm. 

Anna Jaworski: Plus we had no money to do something like that, to have a date once a week. But I will say this, we did keep a gratitude journal. 

Dawn Ilardi: Mm. 

Anna Jaworski: And I think that the gratitude journal was a small means of practicing self-care for both my husband and me.

Dawn Ilardi: Yes. Mm-hmm. 

Anna Jaworski: And writing has always been therapy for me, so I do think I did do some of that, but I would like to challenge my listeners, find ways that don't cost money, that don't take a whole lot of time like with the Gratitude Journal, we would just write three things we were grateful for.

Dawn Ilardi: Mm-hmm. 

Anna Jaworski: And a lot of times I would add four, five [00:32:00] and six because there was so much to be grateful for. But just having a little entry in the diary that reminds you of what you do have, especially when you're going through difficult times, it can make a big difference. 

Dawn Ilardi: And Anna there science behind that too. Did you know that showing gratitude, giving gratitude is actually a way to increase positive emotions? 

Anna Jaworski: That makes sense. 

Dawn Ilardi: It works. Yeah. 

Anna Jaworski: It really does. I think that having a grateful heart and seeing the good-- because no matter how bad things are, there's still something good that can be seen. It's a real challenge sometimes, but it may be a person that you met that you wouldn't have met during that difficult time.

It may be a song that you discovered that has new meaning. Sometimes you really have to stretch, but there is always a way, or at least I've always been able to [00:33:00] find a way to find something good even in the darkest moments. 

Dawn Ilardi: Anna, one more thing. The thing that's real tricky about that whole gratitude positive mindset approach is that it's also really easy to use that and then minimize all of the pain and the fears and the anxiety and the sadness and the grief that we might feel. While I do want to say that gratitude and finding the positive side is definitely helpful, I also want to say sometimes it does depend on the situation and the person. Sometimes sitting in the pain, sitting in the worry and the fear, it's okay too. 

Anna Jaworski: Oh, absolutely. I think you can't really experience great joy without also allowing yourself to experience great sorrow.

Dawn Ilardi: I so agree with you.

Anna Jaworski: Yeah. [00:34:00] One more question... after years of working with families, what has this journey taught you about resilience and love that maybe you didn't know when you first started?

Dawn Ilardi: It has taught me that its power can strengthen many of the risks that we, as providers, worry about every day. As I have followed families and children, some of them from infancy up to the teen years, sometimes I see things that we supported that no longer became a concern.

It was because of the resiliency and the grit and the dedication, and the advocacy and the love that I saw in these families that told me how powerful building up these different skills or these different experiences will be for our [00:35:00] families. Risk is not everything, Anna. The resilience is huge. 

Anna Jaworski: Oh, I agree a hundred percent. I love it that you mentioned this because I just went to the SV-ONE conference in Indianapolis and I got a chance to meet a mom that I've known for, I don't know, 29 years, I think. Because I think she was one of the first moms I met, and her name is Patty.

Her daughter is Meg Didier. Both of them had been on my podcast before her mother wrote for my book, "The Heart of a Mother." And I remember when I first met Patty just being in awe because Meg was just a couple years older than my child and Meg was in gymnastics, and Meg was an Olympic hopeful with a HLHS heart, which just blew my mind that she could do that because there were so many 'don'ts' when we went into the doctor's office.

So it's funny that you said things that you were worried about before. I know that many of the doctors were not thrilled with the idea of this little [00:36:00] girl on uneven bars and the balance beam, and places where she could fall and really hurt herself, yet her mom had been a gymnast and her mom was there every step of the way.

And the things that this young lady has accomplished in her life is phenomenal. And she was such a shining star for the rest of us who followed. So I'll always be thankful to Patty for letting her daughter be the person she needed to be and supporting her and not being afraid to share it with the rest of us because it was because of her, it was because of Jeannie Imperati sharing her stories about Matt, her son, that I allowed my child to take karate and be supportive of that. I think I would've been too afraid to do it if I didn't know of other heart warriors who were a little bit older who had done it and been successful. 

Dawn Ilardi: So that courage and that bravery, it was just a little bit contagious. [00:37:00] You saw a mom allow her child to take a little bit of healthy risks and that's beautiful and that's what it takes to build grit. Is to allow our kids to try new things that are really hard and stressful and difficult, and watch them really rise to the occasion.

Anna Jaworski: Absolutely. And to do things that maybe you wouldn't have ever considered doing yourself... 

Dawn Ilardi: Yes. 

Anna Jaworski: ...like my kiddo being in robotics, that's not something I ever would've thought to do myself, but my child was interested in it and the next thing I knew, I was a robotics coach. So our children have a way of delightfully surprising us so many times if we allow them to be their authentic selves.

Dawn Ilardi: Absolutely agree. And that's why, as parents, when we take care of ourselves, we can really see our children and what they need from us, and that doesn't just include finding resources to support their weaknesses. It also means finding those gifts that we can nurture and [00:38:00] challenge. 

Anna Jaworski: Oh, I just love that. That is so wonderful.

Thank you so much for coming on the program, for developing this program online, and that's the last thing that I'm going to have to ask you about before we go, but you have a wonderful blog. I will put a link to that in the show notes, my friends. But tell us how people can get involved with your online program.

Dawn Ilardi: Parenting Kids with CHD is being built out as we speak. Anna, this is going to include asynchronous video sessions that parents can pick and choose what they would like to see based on what's interesting to them and there'll be a variety of different videos from Frequently Asked Questions such as about ADHD and medications and how to get evaluations, to how to tackle anxiety that you might see in your child or your teen, as well as supporting adult transition, how to deal with early communication delays. So there'll be [00:39:00] some more teaching-related videos. And then I'm also going to try to do some creative things with a little bit of dialogue. I'm using some voices from AI so I can create some characters that people can follow. Maybe they'll want to know their story and what happens to them across time. Also, I will be having a live Q-and-A group so that folks can come online about once a month and they can ask questions and we can see how the conversation evolves.

Anna Jaworski: I love that. That is so valuable. I know when I first got online, AOL was all the rage and we used to have an AOL chat on Friday nights. So in Texas, football is king. Friday night is when you go to see the high school football players doing their thing on the field. But I was in Texas at my computer talking to families around the world who had children with HLHS, and for me that was a lifeline.

So knowing that there's a monthly chat where you can talk [00:40:00] to a professional if you have questions that arise because there will be questions that arise. That'll be a lifeline for a lot of people, I'm sure. 

Dawn Ilardi: I hope so. I'm so excited. And Anna, the other thing is I value the feedback from everybody who is interested in giving it to me because I want to create this platform with families, so I'm starting to work with some focus groups so they can guide me along the way. I want to stay on the right path, and I'm doing this alongside them to meet the needs that they see. I don't know where I'm going, Anna, which is exciting. It's also a little bit nerve-wracking for me, as a scientist, but I know they'll lead me down the right path.

So I'm excited. 

Anna Jaworski: I think that's amazing. I just love everything that you're doing. Thank you so much for coming on the program today and sharing all of this with us, Dawn. 

Dawn Ilardi: Anna, I love talking to you. Thank you so much, and I hope to get to see you in person sometime soon.

Anna Jaworski: I know we're [00:41:00] going to go to the same conference sometime soon. 

That's all for this episode of Heart to Heart with Anna... I'm so grateful to Dr. Dawn Ilardi for joining me today and for sharing her insight, compassion, and expertise with our community. I'll be sure to include links in the show notes to her blog and her upcoming Parenting Kids with CHD program so you can learn more. As I mentioned earlier, I'll be taking a hiatus from Heart to Heart with Anna to focus on my writing, but, Hearts Unite The Globe, and our podcasts will continue.

Twelve years of Heart to Heart with Anna episodes are in the archives, and you can access those anytime you want on Apple Podcasts, on Spotify... pretty much anywhere you listen to podcasts, you can find our episodes. So thank you for your trust, your support, and for being part of this community.

And as always, my friends, remember you are not alone. 

Speaker 4: [00:42:00] Thank you again for joining us this week. We hope you have become inspired and empowered to become an 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.