When Hearts and Minds Unite: Navigating Neurodevelopment in CHD

The journey of raising a child with a critical congenital heart defect (CCHD) involves navigating far more than just medical challenges. Behind every heart surgery and cardiology appointment lies a complex web of developmental considerations that can profoundly shape a child's future.

Dr. Dawn Ilardi, a clinical neuropsychologist with over 16 years of experience in cardiac neurodevelopment, brings clarity to this often-overlooked aspect of heart care. Unlike typical developmental patterns, children with CCHDs may present with scattered strengths and weaknesses that don't fit neatly into standard diagnostic categories. While some may develop recognizable conditions like ADHD, autism, or dyslexia, others show unique profiles that require specialized understanding.

The conversation explores the fascinating heart-brain connection, revealing how brain development begins simultaneously with heart formation during fetal development. Structural heart defects can affect blood flow patterns to the developing brain, while surgical interventions carry risks of small strokes or other brain injuries. For parents wondering why their child struggles with handwriting, speech delays, or learning difficulties despite excellent medical care, this discussion provides crucial insights.

Particularly compelling is the discussion about balancing protection with developmental progress. How do you navigate the tension between keeping a medically fragile child safe while ensuring they develop age-appropriate skills and independence? Dr. Ilardi offers practical strategies for finding this balance, emphasizing the importance of creating a supportive "village" around both the child and parents.

Whether you're a parent, medical professional, or educator working with heart warriors, this profound conversation will transform your understanding of the developmental journey these remarkable children face. Most importantly, you'll discover pathways to help them reach their full potential through multisensory learning approaches, compensatory strategies, and family-centered support.

Helpful Links:

Christy Pace's CHD Connects Hearts: https://chdconnectshearts.com/home

Dawn Ilardi's other Heart to Heart with Anna Appearances:

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

What is Normal Child Development in Children with Complex Congenital Heart Defects? https://tinyurl.com/DawnIlardi2014
 
 Dr. Ilardi's website: https://www.pedneurocenter.com
 
 Dr. Ilardi's email: DawnIlardi@pedneurocenter.com

Gastrointestinal Issues and Feeding Tubes in the CHD Community: https://www.buzzsprout.com/62761/episodes/1999819

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

Chapters

• 0:00 H2HwAnna 2025 Dawn Ilardi
• 0:48 Interview with Dr. Dawn Ilardi
• 22:24 Segment 3

Transcript

H2HwAnna 2025 Dawn Ilardi

Dr. Dawn Ilardi: [00:00:00] The tricky thing about neurodevelopment in CCHDs, Anna, is that sometimes differences and concerns fit into these categorical boxes that are typical for other kids. Sometimes they don't. 

Anna's Opening Story

Anna Jaworski (2): Hi friends. I can't wait to share my interview with Dr. Dawn Ilardi with you. But first, let me share a personal story and then the news.

Anna Jaworski: Let me tell you, life has a funny way of keeping us on our toes, or in my case, flat on the floor. Picture this: I'm in New Orleans with my daughter, all set for a writer's conference, feeling inspired and ready to soak up the creative vibes. But before the first session even starts, I find myself in an unexpected showdown with an ironing board.

It all began innocently enough. I was setting up the ironing board to give my shirt a quick press before heading out, but as I was [00:01:00] unfolding the board, it suddenly decided to stage a rebellion. Long story short, I lost my balance and the ironing board won the score ironing board ONE, me ZERO. Now I'm sporting a broken wrist and feeling incredibly lucky it wasn't a hip or a concussion. Honestly. Who knew ironing could be such an extreme sport? But hey, every cloud has its silver lining. This cast is going to be the hottest autograph book in town, so Patrons and Volunteers, when we meet up in April and May, bring your Sharpies because this cast is open for signatures.

Sometimes life throws you curve balls or, in my case, ironing boards. But we keep moving forward a little more bionic and with stories to tell. Let's go to the news.

News

Anna Jaworski: Christy Pace is revolutionizing the way the congenital heart defect (CHD) community [00:02:00] connects with her new initiative: CHD Connects Hearts. This platform aims to bring together individuals affected by CHD patients, families, advocates, and healthcare professionals to foster collaboration, share resources, and build a resilient community.

The website serves as a hub for information, support, and opportunities to engage with others who understand the unique challenges of living with or caring for someone with CHD. The need for unity in the CHD community is critical. CHD is the most common birth defect around the world. We know it affects at least one in a hundred babies born each year.

Despite medical advancements that allow many individuals with CHD to live to adulthood, disparities in care, access to specialists and long-term support problems persist. Geographic barriers, [00:03:00] socioeconomic factors, and a lack of awareness about lifelong care continues to contribute to these challenges. By creating a centralized space for connection and advocacy, Initiatives like CHD Connects Hearts empower the community to address these issues collectively. 

Christy Pace's Vision underscores the importance of solidarity and overcoming obstacles faced by those impacted with CHD. With platforms like this, the CHD community can amplify its voice and work toward equitable care and improved outcomes for all. For more information, visit her website at CHD Connects hearts, and I'll have the link in my 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 [00:04:00] pertaining to congenital heart disease or bereavement. 

Anna Jaworski: Now onto the show.

Interview with Dr. Dawn Ilardi

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski and the mother of an adult with a single ventricle heart. That's the reason I'm the host of your program.

I'm thrilled to welcome back Dr. Dawn Ilardi, a board-certified clinical neuropsychologist with 16-plus years of experience helping children with neurodevelopmental disorders. She specialized in cardiac neurodevelopment at Children's Healthcare of Atlanta, focusing on families with complex congenital heart conditions.

As part of the cardiac neurodevelopmental program and the CNOC collaborative, Dr. Ilardi researches the long-term neurological effects of pediatric heart disease and frequently speaks at professional and family events. Now in private practice, she provides personalized strategies to support children with heart conditions, helping them reach their full potential through a family-centered [00:05:00] approach.

Dawn recently appeared on the show where we discussed neurodevelopmental aspects of children with critical congenital heart defects or CCHDs, and the importance of families. In today's show, we'll be expanding on the topic to discuss neurodevelopment and learning disabilities in children and adults with CCHDs.

Welcome back to Heart to Heart with Anna, Dr. Ilardi. 

Dr. Dawn Ilardi: Anna, thank you so much for having me back. It's always such a pleasure to talk to you. 

Anna Jaworski: I always enjoy learning from you, and I have a feeling that today we'll be talking about some new topics that I'll be learning even more from you. You've been on a program twice talking about child development and heart-brain connection, especially regarding CCHDs. Can you share with us some of the neurodevelopmental diagnoses that you see with CCHDs?

Dr. Dawn Ilardi: Absolutely. The tricky thing about neurodevelopment in CCHDs Anna, is that sometimes differences and concerns fit into these [00:06:00] categorical boxes that are typical for other kids. Sometimes they don't. Sometimes we see lots of various scattered strengths and weaknesses across different developmental domains.

But other times we do see developmental diagnoses that warrant more focused intervention and support. This might be something very focused like an autism spectrum disorder or an ADHD, attention deficit hyperactivity disorder, or perhaps a language disorder. Also included in the neurodevelopmental disorders could be a learning disability, like dyslexia.

Anna Jaworski: Mm-hmm. 

Dr. Dawn Ilardi: Sometimes kids show more general concerns from a neurodevelopmental perspective. And this could be global developmental delays that affect multiple different domains. Or even as kids get older, we discover that this is an actual intellectual disability that affects them more globally in terms of adaptive skills [00:07:00] and cognitive skills. There's a lot of variability, Anna, in terms of what we see in neurodevelopment for CCHDs. 

Anna Jaworski: Is the same true for the population at-large or is it more targeted with our population? 

Dr. Dawn Ilardi: It is not quite the same in the typical population. What we understand from lots of research of studying how symptoms cluster together, is that when healthy kids in the normal population deviate from typical development, they usually fall in one or more of these neurodevelopmental categories, right?

And sometimes they co-occur. But because many of the children with critical congenital heart disease who've had surgery in the first year of life are at risk of differences in brain development, they can show more variability in how their developmental differences present. And they may not show in these categorical ways and that's why we see some scattered variability across different [00:08:00] domains but we also do see sometimes that they meet criteria for these different clinical diagnoses. 

Anna Jaworski: Do you think that one of the reasons why some of our children with CCHDs present this way is because maybe they've had little strokes while they're in the operating room?

I know my child had two open heart surgeries, and two catheterizations in the first year of life, and there's always a risk for strokes. 

Dr. Dawn Ilardi: That's true, Anna. There is an increased risk of strokes and sometimes they're very small. Sometimes these strokes, occur before or after the surgery as well, and then other times we notice that there are abnormalities in the brain tissue.

It can be in the subcortical areas, it can be in the white matter connective tissue in the brain, or in the higher cortical structures. And this can occur also before birth, around the time of birth, before and after surgeries. Yes. So there's different [00:09:00] types of abnormalities in brain health that we see that don't just include strokes.

And this is where a lot of research is actually focusing right now so we can better understand the timing and whether or not interventions can be done to reduce the risk of these different types of injuries. 

Anna Jaworski: That's fascinating. Well, I know my daughter had a stroke and she had all of the classic clinical symptoms of having a left temporal lobe stroke after her second open-heart surgery. And I told her doctor, but he told me I should be happy she was alive, which of course I was. Nowadays, I think pediatric cardiologists would refer me to a neurologist but 30 years ago that just wasn't done. At least it wasn't done in the hospital where my daughter was. But I wonder if some of our children, while they're in the womb, and the heart is developing, with the heart not developing properly, if maybe something else is going on with the brain at the same time because it's so complicated. It's [00:10:00] not like the body works on the foot and then it works on the head, then it works on the brain. It's like everything is happening at the same time. 

Dr. Dawn Ilardi: You are right. And we do know that there are some prenatal differences in how the brain is forming especially when there are defects in the structure of the heart.

As you guessed it, the brain and the heart start developing at the same time. in some types of defects, we may be more likely to see structural differences such as changes in how the two hemispheres are connected or how some of the folds in the brain develop. We're also noticing differences in the way the circulatory patterns occur from the fetal heart up to the brain. Some types of CHD, the maternal circulation can help compensate, but in other types it doesn't. So it's quite complex. And because the different types of CCHD, vary drastically, depending on the structure of the heart and how the circulation [00:11:00] patterns occur, it would change the risk for various different types of prenatal injuries or structural abnormalities.

Anna Jaworski: That's just fascinating. 

Dr. Dawn Ilardi: We do know that the role of the placenta is important, and we're discovering that some abnormalities in the placenta may be predicting, at least in some cases, a relationship or increased risk for abnormalities in brain development. And then there's this other factor in many children, we don't know what caused the CCHD, for example, if it was a prenatal toxin or if it was a genetic abnormality, or if it is other risk factors... prenatal exposure to substances, other things that we know can increase risk of CCHD. Probably the strongest predictor, Anna, above and beyond the CCHD itself is whether or not the child has a genetic diagnosis. 

Anna Jaworski: That makes a lot of sense. Dr. Paul Grossfeld came on the program and he was talking about the genetics of critical congenital heart [00:12:00] defects, specifically hypoplastic left heart syndrome. What was so fascinating with his interview was that he said now they have sophisticated enough diagnostic tools that they're starting to see that some CCHDs that were previously labeled as flukes of nature are not! That there actually might be something wrong with the 11th chromosome, and the more sophisticated these studies can become, the more answers we will have.

But the thing that I found most fascinating, and I think you would find this fascinating too, Dr. Ilardi, is that he said he could have two children that presented with a problem with the 11th chromosome and one child would have full-blown hypoplastic left heart syndrome and the other would not.

So that problem with that one chromosome could be a predictor, but may not. And he and I were talking about how we believe that the problem [00:13:00] with the chromosome means that there's a greater probability the child will have a problem, and that then if the parents, especially the mother, is exposed to certain toxins that can be all it takes to just push that baby over into actually having a full-blown HLHS heart.

Dr. Dawn Ilardi: I totally agree with you. The interaction between gene and environment is fascinating and also so complex. Hmm. And it's always surprised me in my work with families and children how, a medical condition or a genetic diagnosis or brain imaging, they're just not enough to explain what we're gonna see in a child.

So, for example, if a child has hypoplastic left heart and maybe a genetic abnormality. If they have strong family genes and they get lots of resources from the family and they end up in a great school, this [00:14:00] child is gonna be protected in many ways and may not express some or be impacted by some of the commonly associated developmental or medical concerns.

Versus another child who had the same medical profile but also had a stressful prenatal experience, maybe advanced maternal age, maybe low resources, and a failing school system would present much differently. So, you're right, the environment matters. Medical is never gonna be enough information to understand a child. 

Anna Jaworski: Right and this is one of the problems when it comes to doing research with speech pathology or with education. I hated it, as a special ed teacher, that people would call them 'soft sciences.' They're not soft sciences in my opinion, but we just don't have such clear-cut answers because there are so many factors that can influence [00:15:00] how a child does, how a child performs on a test.

Did the child eat breakfast that morning? Did they have a fight with their brother or their parents, or are Mom and Dad now getting a divorce? There are so many factors that we can't even see that when it comes to testing and to seeing how children develop speech, language, academic skills. I think there are almost too many factors to be able to take everything into account and get the most reliable data.

Dr. Dawn Ilardi: It is really challenging to measure a child's abilities and that's why when families are trying to figure out how to support their child, they really wanna work with somebody who, ideally understands a bit about congenital heart disease because these children are gonna present differently, on testing in some ways.

And it may lead to more complexity when figuring out whether or not a child meets criteria for a diagnosis, [00:16:00] which can help guide the type of intervention that's selected first. So measurement is complex in any child because of all those factors you just mentioned. But you add the medical pieces too and a potentially different developing brain so you want somebody who understands CCHDs for the evaluation for sure. 

Anna Jaworski: What signs or symptoms would parents notice in their young children, or maybe even infants that would be red flags and help them to know they really need to seek help?

Dr. Dawn Ilardi: Most of the time I think that parents are very intuitive and in their gut or, in the back of their mind, there are things that nag at them. 

Anna Jaworski: Mm-hmm. 

Dr. Dawn Ilardi: They know when things are a problem. That's my general experience, Anna. So I think that if I was to give you the list of things, none of them would surprise you.

And most of the time parents already have a sense of something. Now next you add [00:17:00] the layer of worry and anxiety. Sometimes overprotection, that it happens and sometimes families have anxiety that makes it really hard to pay attention to certain things because they're more worried about something that feels more important.

So perhaps a child is showing some early signs of developmental differences, but also at the same time is being considered for transplant because they're not stable. Mm-hmm. So this family might know exactly what's going on, but this is just not the time for them to think about or they're not sure how to rally the resources and to problem solve and to work with therapeutic resources to, to get things in place.

So I wanna start by acknowledging that parent intuition is usually spot on. And that anxiety and focusing on what matters are sometimes some things that get in the way of a parent paying attention to what those things might be. The other tricky thing [00:18:00] about development is that it's very discontinuous.

Sometimes things show up early and sometimes things don't show up until late because the environment isn't taxing the child so that those things could actually be difficult. Right. 

Anna Jaworski: Right. You got it. Like executive function, that's gonna show up much later than speech development.

Dr. Dawn Ilardi: Yep, you're right. Yes. When things start becoming more difficult to manage, there's a lot of juggling of different responsibilities. You have to learn to prioritize, and you do see some executive functioning challenges in younger kids. It can include things like difficulty inhibiting and being very impulsive or dysregulated.

Sometimes it's challenges with inflexibility and shifting. So you do see a little bit of this in young kids too. Yeah. Mm-hmm. For sure. But you're right. Oftentimes, we don't notice things until later. 

Anna Jaworski: Okay. So let me ask you this because I think you just hit on something really [00:19:00] important.

There are times in our lives when we have children with critical congenital heart defects, and they're between surgeries or maybe they're being listed for transplant. At that time when families are extremely stressed, the child may be in the hospital, may not be in the hospital, maybe at home, where the parents are constantly monitoring them.

And having been one of those parents, I can tell you that's extremely stressful when they're telling you, "Okay, you'll know when it's time to bring a baby back in." And, of course, you have regular checkups, but in my case, I was constantly comparing my nail beds to my baby's nail beds to make sure that they weren't too much bluer and it was all so subjective, which is very stressful. As a parent, you want to make sure you're on top of things, but you also don't want to be that parent who is constantly calling the doctor or constantly calling the nurse or constantly bringing your children up to the hospital because then there are other things they can catch.

You spend a certain [00:20:00] amount of time, when you're dealing with these babies who have staged procedures, like mine did, feeling like you have to be in this insulated bubble to keep the child as well as possible so that they can have that next scheduled surgery on time. At that time, it's kind of hard to think about also, "Oh, no! My baby's not producing this sound," or "My baby's not babbling as much as I think they should be."

Will the baby catch up later? Is it okay to just let that go and focus on the medical health and not worry so much about the neurodevelopmental health?

Dr. Dawn Ilardi: That's tough, Anna. 

Anna Jaworski: I know, isn't it? 

Dr. Dawn Ilardi: I think on a case it's really hard. 

Anna Jaworski: Yeah. 

Dr. Dawn Ilardi: On a case-by-case basis is the only way that you could make that decision really because in some situations, a child can catch up with really good instruction. It just depends on how long they [00:21:00] have missed out on age-typical exposure to learning or to social opportunities.

There are some things that should come online naturally. I'll give you one popular example that's happened, especially since the COVID pandemic, which is social skills. 

Anna Jaworski: Yes. 

Dr. Dawn Ilardi: So social skills come online naturally, and it's not something, and I'm gonna say this cautiously, but it's not something that requires instruction or opportunity.

Many of our kids, that lost a lot of social opportunity during the pandemic who are showing some social concerns, parents wonder, 'Was it because they weren't in school? Or is this actually something else, such as an autism spectrum disorder?' The other thing is language development. Parents can still read and talk and teach to help language develop naturally. There are other things that need exposure, [00:22:00] like reading.

Reading really needs to be taught in many children, they're not gonna pick it up naturally. If you wait too long, by third grade, a child is no longer learning to read, but reading to learn. Exactly. So, yes. Yeah, that's huge. That's huge. You're right. So if you're talking about a critical stage in the child's ability to learn to read independently, fluently so they understand the material, I worry a lot about lack of exposure.

Okay? 

Anna Jaworski: Mm-hmm. 

Dr. Dawn Ilardi: So that gives you an example of how you might tease apart which things to focus on and what things you might let go. But the reading would be one of those things that I would wanna make sure I figured out how to keep my child exposed so that they kept learning.

If that meant a tutor that comes to the home or after school, depending on the child's level of medical fragility, I [00:23:00] would want to keep that going. 

Anna Jaworski: Absolutely. And I think sometimes you have to get creative. So say both parents have to work because they need the insurance. There are huge medical bills.

There's no option for one parent to stay at home. They have to both work. You can still find other ways to introduce reading thanks to Kindles and audible books. There are so many other ways children can hear stories. A lot of learning to read is teaching the children about story structure and anticipation and vocabulary, and you don't have to physically have your child in your lap, although that is really awesome.

So even if you have a grandparent, an aunt, an uncle, a brother, a sister, a friend who interacts with the child and can exclaim, and be surprised when something surprising happens in this story and really interact and enjoy looking at the pictures if it's a picture book and talking about the book, not just [00:24:00] reading the words.

That's huge. That is so important. It doesn't have to be the parents, and I want parents to know it's not all on you. I have heard the expression, I'm sure all of you too, that it takes a village. It really does, especially with our heart kids. It takes a lot of people to help them to live their best life.

Dr. Dawn Ilardi: I want to second that. Absolutely. There is a village out there that's waiting to support the kids and every family, especially when there's a medical team sitting alongside you. And sometimes they have access to resources that families may not know about if they can just ask a few questions. Anna, I'll add one thing with regard to reading.

So you're absolutely right. There's some social and contextual aspects to reading and pulling the meaning out of the text. Very early on, the child is also supposed to be developing decoding skills and yes, and a phonological awareness. And those [00:25:00] are things that are very hard for parents to teach.

I know myself, there is no way I could teach my daughter to read if she had a learning disability, for example, because I don't have the expertise to be able to teach decoding skills. And it doesn't just work to sound out the letters. And this is oftentimes what families know how to do. Asking teachers at school or the school teacher in the hospital about reading challenges and if you can get some tutoring support, sometimes there may be something right at their fingertips that could even be virtually provided, to help a child build those phonological awareness and decoding skills so that they not only are gonna be able to eventually understand meaning and vocabulary from reading with family, but they'll know how to read independently.

Anna Jaworski: Absolutely. Absolutely. 

Hearts Unite the Globe: Heart to Heart with Anna is a presentation of Hearts Unite the [00:26:00] 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.

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Books celebrating strength, love, and familial support. Visit baby hearts press.com and be part of our loving community uplifting hearts. One story at a [00:27:00] time. 

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 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. 

Segment 3

Anna Jaworski: In the first segment, we talked about neurodevelopment in CCHD children and we talked a bit about the family and also the medical support they can have. But I'm wondering if we can shift the discussion to specific learning disabilities. Like what type of learning disabilities are typically observed in school-age CCHD children and when are they usually first detected?

Dr. Dawn Ilardi: Anna, you'll notice that I was talking about reading and so I'm going to start off with dyslexia. Okay. Dyslexia is among [00:28:00] the three different types of learning disabilities, and it's also called a learning disability with impairments in reading. So dyslexia, as you heard me mention, includes those deficits in phonological awareness and decoding as well as fluency.

We do know that children with CCHDs are at increased risk of learning disabilities. Unfortunately, right now we need to do a lot more work at understanding the prevalence of these, because what we know the most about is that there are subject-specific delays in these different areas.

When they look at statewide testing for reading and math, they notice that children with CCHDs are performing lower than they should be for their grade level. Then we also see across different neurodevelopmental outcome studies that kids are delayed in [00:29:00] different academic areas compared to the normative population in the areas of reading and math as well.

We're starting to understand some of the mechanisms, the different cognitive areas that are contributing to some of these delays. And it can be things like attention or processing speed or visual-spatial skills. There's some handwriting difficulties that are related to also visual-spatial skills and fine motor skills.

But as you're noticing, I'm hopping back and forth between learning disabilities and delays in academics. That's because that's where we're sitting right now with the research on outcomes. We have just a little bit of data about learning disabilities and that there's a higher rate such as dyslexia but then also we know more generally that there are delays or deficiencies in these areas that we need to understand better. 

Anna Jaworski: That's fascinating. So, for my own child, she had a [00:30:00] stroke with the second open-heart surgery and came out completely aphonic. So as a 10-month-old baby, she went in saying, "mama, bye bye, dadda," and had about 25 words.

My background's in speech pathology so I really focused on that and I was a special ed teacher, so I really focused on her.... 

Dr. Dawn Ilardi: She was lucky. 

Anna Jaworski: ...development. She really was because she was completely aphonic and I worked with her. But until her diaphragm improved, there was no way her vocal cords were going to recover enough.

So luckily it took about a month and a half and her diaphragm improved enough that we could get rid of the oxygen. But I wonder for so many kids, what is it like if they do have to be oxygen-dependent like my daughter was? And they do have paralyzed vocal cords. I learned as a speech pathology student that when children are delayed in speech and language development, they frequently [00:31:00] have learning disabilities as well.

I was a very astute observer of my daughter's behaviors and I was very happy to see that even though she did have a stroke and it did affect her speech, that her receptive language skills were spot on. She was still doing great with her receptive language. It was just the expressive language.

And for those of you who are listening who don't know what that means, that means that she understood what was being said to her. We still played peekaboo. We were still doing wheels on the bus and playing games and singing songs with her. I have a son who's three years older than her, so she was still doing all the things with her brother that she did before she had the stroke, except she couldn't make any sounds.

But when she did have the ability to speak, she spoke like an aphasic patient. And thank goodness I had studied speech pathology and I employed all the things that I learned in school to my [00:32:00] daughter and my three-year-old son became my speech assistant because I made it all games. We just played games and sang songs and had fun all the time.

Dr. Dawn Ilardi: That's great. 

Anna Jaworski: But it took her about a year or so before she had speech that was intelligible and I had to use sign language in between because she started throwing temper tantrums. Her receptive skills were great, but she couldn't make herself understood and I wasn't willing to just give her everything.

I wanted her to try to produce speech and that would make her frustrated so she would have a temper tantrum. So I ended up introducing sign language as a bridge, and that's what finally ended up helping her to regain the ability to speak. But I feel so sorry for other parents who don't have those skills. What can they do to help their children if they're oxygen-dependent, if their vocal cords are paralyzed?

We know that the development of speech and language skills is [00:33:00] crucial for learning subjects later in school, for having a successful matriculation in school. 

Dr. Dawn Ilardi: Well, when you don't have this superwoman speech therapist mom at home, which most kids don't, I think that probably using the village that we talked about earlier is going to be key. Talking to your doctors and your medical team about getting a speech therapist to work with your child because it is a lot to juggle and you've mentioned a number of different things.

 Whether it's the speech articulation, whether it's the receptive language or is it the expressive language? Then eventually, what is it about the reading that's difficult? There's just so much along the spectrum of verbal skills that would need to be teased apart, and you would have to figure out somewhat systematically where to start.

Anna Jaworski: Yeah. 

Dr. Dawn Ilardi: And honestly, it would be a daunting task for any parent so using your [00:34:00] medical team, using your school team. There are speech therapists in school systems that are often available to do an evaluation and certainly if a child is oxygen-dependent, this is going to be much more complex, but... 

Anna Jaworski: Right.

Dr. Dawn Ilardi: For the child who's in the school and you still have concerns about the interplay of different verbal challenges, using your resources within that system will also be helpful. 

Anna Jaworski: Another thing that everybody needs to think about is, did your child need a feeding tube? Because if your child needs a feeding tube and is not taking food by mouth, they are not developing the muscles in their tongue, in their lips, in their mouth, that are crucial for speech development.

So has there been any research done to tease apart children with CCHDs who had feeding tubes versus those who had CCHDs that didn't? And if their speech and language development [00:35:00] was the same or if it was actually different? 

Dr. Dawn Ilardi: Absolutely. There's been a lot of research on the impact of feeding tubes, and the timing of getting kids feeding independently.

Anna Jaworski: Mm-hmm. 

Dr. Dawn Ilardi: And how that influences a lot of things downstream. I have not kept up on the research more recently, but this has really been exploding, including the importance of how getting off the feeding tube and helping the child at whatever stage of development they're at, getting that child feeding as age-appropriate as possible, how critical it is to so many different aspects of early development.

But it's an exploding area of research. Definitely, something that's growing within CNOC. I would send interested listeners over towards CNOC to see if they can find some resources related to feeding and outcomes, because there's a lot happening. 

Anna Jaworski: Several years ago, oh my gosh, really early [00:36:00] when I started doing this podcast, I actually had a mother come on the program who had a son who was on a feeding tube, and she wanted to get him off the feeding tube, and there was no exit strategy with her team.

Now, this was a long time ago. I'm going on 12 years of podcasting friends, so I think this was about eight or nine years ago. Hopefully, things are better now than they were back then, but she ended up seeking help overseas, believe it or not, thanks to the beauty of the internet, and she was able to get a specialist to work with her even though this specialist was not even in the same country.

They were able to do everything over the computer. She taught the mother and the father what needed to be done and that episode really impacted a lot of families. I didn't realize how much it would because I didn't have a feeding tube in my child, so it wasn't something I had to deal with. But I actually had a number of other members of the heart community reach out to me and tell me that after they [00:37:00] listened to that episode, it changed their lives.

They at least had the vocabulary to go back to their child's medical team and say, "Hey, what's the exit strategy for us getting our child off of the feeding tube?" So I think that's the first thing you need to think about is what exit strategy is planned. I think a lot of times there really wasn't an exit strategy.

They just thought that the child would let them know when they were ready to eat, and that's not necessarily true. There are things that you can do with the child to help prepare them to get off of the feeding tube. I'll make sure I put a link to that show in the show notes for this episode.

I just think it's crucially important and I think it's something that really wasn't investigated until the last decade or so. Does that sound right to you, Dr. Ilardi? 

Dr. Dawn Ilardi: It sure does, and it's refreshing to hear more and more professional presentations about this being integrated into conferences for medically complex children.

So I [00:38:00] agree with you. It's emotional, it's biological, it's physical. Feeding in developmentally appropriate ways is critical to the course of development. I'm glad that we're talking about this and people are changing the course of care and supports. 

Anna Jaworski: Exactly. Parents need to know what questions to ask. Having to carry a kangaroo pump with you everywhere is so prohibitive. So many of the parents that I've taught to whose children need to be on continuous feeds, it's a huge disruption to their lives, and they end up leading a life that's kind of in a little bubble. Then we're talking about those social skills again too, because the child is not exposed to other children their age. They're not even having the grandparents come over and hold them and play with them like children normally would. So they're missing out on a lot of those normal one day after another consecutive days of bombardment with information and laughter and all those things that children need to grow up to be [00:39:00] strong, and to be well adapted.

I think we need to think about those things. The hard thing is that when you're dealing with a child who is medically fragile, exposing them to lots of germs is terrifying. So you have to weigh it. 

Dr. Dawn Ilardi: Yes. Yes. And, Anna, you've made me think about something and it's nice that we can introduce the stuff that's in this natural conversation that keeps coming up. I would like to add a point to what you've just mentioned, which is the role of protecting your child, and what we're learning from the CCHD population, but also other populations is the balance between protecting our child, but also helping them find that typical developmental course.

Mm-hmm. It almost feels impossible. It's critical, right? When you're trying to protect your child from something like germs or abnormal swallowing or whatever the concern is, yes, for some families, they're going to stay the course [00:40:00] because of those fears. And it's true for other areas of development too, is helping parents find where and when is it time to present your child with the age-typical expectation where and when?

Because if we stay the course and we over support them, we do the things that are no longer necessary. We run the risk of potentially contributing to developmental delays or difficulties longer than we should. Mm-hmm. And also contributing to perhaps some emotional symptoms or feelings that they're not able to do the things they're supposed to that are age typical.

So this balance of finding out how to step out and get more age-typical expectations is critical of the entire course. 

Anna Jaworski: Okay, let's look at the mental health as well. How much anxiety is being infused into that child's life when the parents are anxious? Trust me, [00:41:00] friends, you will be anxious.

Dr. Dawn Ilardi: Yeah. 

Anna Jaworski: If you're between surgeries. 

Dr. Dawn Ilardi: Yeah. 

Anna Jaworski: And you really don't want your baby to get sick. There is a certain amount of anxiety that goes with that. No matter how much music you play and fun things you do with your child. There's always that nagging, 'Oh my gosh!' -- you're waiting for the other shoe to drop.

It is hard. So friends, please do what I did. Reach out. Talk to a counselor. I think every parent of a child with a CCHD should have a counselor to talk to, even if it's just every once in a while. I waited until I went into a serious depression and I got sick and couldn't seem to get better.

It took that much for me to finally say, "Wait a minute, I need help." Because I wasn't even aware of how much anxiety I was carrying with me. I wasn't even aware of what that was doing to me mentally, because I was trying to be super mom. [00:42:00] I was trying to do everything and be everything for my kids, and I knew we could beat this.

And I was keeping a really positive attitude about it. And we had a great medical team. I knew we could beat this, but it took a toll on me. 

Dr. Dawn Ilardi: Of course. 

Anna Jaworski: If I hadn't had that extra help, friends, I don't know how I would've done it. 

Dr. Dawn Ilardi: Yeah, Anna. I can't help but think when I hear a story like yours... we describe this anxiety, but it's normative.

Who wouldn't be anxious in these circumstances with their fragile child navigating an unchartered territory, not knowing what the outcome will be. It's hard to label it anxiety, so to speak, because it seems terrifying. So it's almost like a normative fear. But when parents, and this is the same rule for children too, when this anxiety or this normative fear starts [00:43:00] to dip over into anxiety to the point where daily life is hard and meeting expectations and demands, and taking care of yourself with good sleep or decent sleep and eating well. When these symptoms start to impact daily life, that's when it's a real clue that, you need help, your child needs help. I'll circle back to the themes that we keep talking about, Anna, which is that CCHD children, they have all kinds of outcomes, sometimes very isolated concerns and weaknesses and differences. Sometimes global developmental differences and delays or deficits.

And when do you know to do something about it... as well for the parent? When do you know to do something about supporting your anxiety and worry? It's when it impacts daily life. That's your yardstick. When those symptoms are so bad, are so [00:44:00] hard that it's changing or impacting some facet of your relationships, your work, the child's school, home life, et cetera.

That's your sign that more support, more resources, larger village, more people are needed on board. 

Anna Jaworski: One thing you can do before you get to that point is you can seek out people on Facebook. I didn't have Facebook, so that wasn't an option for me.

However, I did belong to a listserv and my veteran friends who are listening, you all remember the AOL list serve that we belonged to. 

Dr. Dawn Ilardi: Mm-hmm. 

Anna Jaworski: And we used to have a Friday night chat . So I'm a Texan. Friday night's usually football--all the families go to football games for the high school football teams, but I was at my computer talking with other families who had children with HLHS or single ventricle hearts. That was a lifeline for me. That was so important. And looking back now, I can see where so many of us would say, "My baby's teething, and now [00:45:00] they're doing this or that. Do you think I need to call the cardiologist?"

We were able to share so many stories with each other through that listserv that it probably prevented a lot of phone calls to the professionals. 

Dr. Dawn Ilardi: Mm-hmm. 

Anna Jaworski: Because we could share our own experiences and they could see, okay, there were six of us that are saying, my kid went through the same thing and there's only one person who said, oh yeah, maybe you do need to go and then trust your gut.

We parents know if we really need to take our kids in a lot of the time. But when you're on the fence 

Dr. Dawn Ilardi: mm-hmm. 

Anna Jaworski: And you're like, "I don't want to be that parent who's constantly in the ER. Is this something that's okay?" Talking to those other parents who have walked the same walk you are can make a huge difference.

The other thing that you can do that I didn't have as an option 30 years ago was there are camps and The Ollie Hinkle Heart Foundation has camps for parents... There are so many. Go to my website and look at resources. There are camps that are not just for the heart kids, but for the [00:46:00] siblings and for the whole family.

Get out, have fun, be with other parents and make some other friends who are heart parents; they'll understand what you're through. Just having that sounding board and knowing that you're not alone... that's why I do this podcast because I needed to let other people know 'you are not alone.' And now I'm facing all new problems because now I have an adult with a congenital heart defect.

And it's just like you said, some problems did not present until much, much later. You talked about handwriting. Hope's handwriting was horrible. It was abysmal. And I started doing a dialogue journal with her when she was four. I didn't intend to, but since Big Brother had a dialogue journal by the time she was four, she insisted she needed a dialogue journal as well.

So I really expected her handwriting to be a little bit better earlier than Joey's because I didn't give Joey a dialogue journal till he was five [00:47:00] and it wasn't. I taught her how to touch type when she was young. I think she was six when I taught her how to touch type. And it was so hard because she had these itty bitty, teeny tiny fingers and she would get frustrated because it was harder for her to push down the keys than it was for her brother because he had bigger fingers. But I'll tell you what, she can type so fast and she is really good and she doesn't have any problem expressing herself through writing, I think, because she learned how to touch type so early. If I had forced her to do the handwriting... when I did make her do the handwriting... there were a lot of tears.

It's not like I abandoned handwriting, but I definitely didn't focus on it. At a certain point, I just focused on getting the ideas out, enjoying communicating through writing, and whether it was with a computer [00:48:00] or whether it was with a pencil or a paintbrush, I gave her exposure to all of that.

So a Gestalt learning approach with our kids, I think is even more critical. You were talking, Dr. Ilardi, that there can be deficits in certain areas, but not in other areas. By giving a more gestalt or a more global approach to reading, to writing, to speech, it opens up the opportunity for the area of the brain that is not damaged to blossom. Kids' brains are amazing. They are so elastic that if you find a pathway that works out--great! That can compensate for the areas where there are deficits.

Dr. Dawn Ilardi: You're right, and everything you've just said is supported by science. So absolutely, Anna! Multisensory learning and engaging different senses changes the way the information goes in and the way it's [00:49:00] stored and the way it can be retrieved and utilized in different contexts.

Giving kids tools that help them compensate is giving them a different way to provide output. If it's typing or even modified writing. All of that is appropriate because we still need to give them tools and resources to show what they know. So creatively maximizing those positive pathways or those stronger abilities is definitely recommendations that you want to see from your school team or from your therapist or from any professionals that you're working with.

You want to ask for the strategies that you can be using at home, on homework, or even passing along stuff that you are learning from working one-to-one with your child at home, that they can try in the school setting. 

Anna Jaworski: If they're really, really struggling friends, there's nothing wrong with communication boards, and you don't even have to go buy a [00:50:00] fancy, expensive one.

Take pictures. You can use pictures and put them on a mat and let the child point to the things they want. If speech is really hard, you want to facilitate that communication. You want the communication to be fun. You want it to be motivating for them, 'Oh, if I point to the juice box, Mom's gonna get me some juice.'

When it's more fun, then they're going to want to do it more. Who wants to do something when all it is, is a huge struggle? Do whatever you can to make it fun. I think that. Is critical. I wanted not only to teach my children subjects, I wanted to teach them how to learn. And I wanted learning to be fun because I knew if I could teach them how to learn, and I knew that if learning was fun for them, then they could learn anything on their own later.

They just needed those basic skills so badly. 

Dr. Dawn Ilardi: [00:51:00] And when learning is fun, you've hit the jackpot. It sounds like you got really lucky, Anna, figuring out these creative solutions and with your background you were able to problem solve and break molds to be able to figure out what worked for your daughter.

Some families don't know how to be creative or they feel like when they work with their child, there's a lot of tears or frustration or refusal. 

Anna Jaworski: Yeah. 

Dr. Dawn Ilardi: I just wanna make sure I validate those two because sometimes it's actually much better and easier for families to actually pull away because of the distress it creates for their relationship with their child. Sometimes you can't be a teacher, a therapist, and a mom. 

Dr. Dawn Ilardi: Yeah. Oh, that is a true, sometimes you have to do, 

Anna Jaworski: yes. 

Dr. Dawn Ilardi: Just be mom, just be mom. Don't try to be everything. It just doesn't work for some families. 

Anna Jaworski: Especially when there are more children that are involved. I [00:52:00] was lucky that Joey was so excited to have the baby in the house and wanted to teach, wanted to blow bubbles and yeah, I did have that special ed background. I really feel like God put so many of the right steps in a way for me to have those to be able to do.

Okay. Yeah, I really do feel blessed in that way because I wasn't planning on being a speech pathologist ever. But that's a whole other story. And it served me well. And everything I learned studying speech pathology I ended up using with my child, which was really quite surprising. 

Dr. Dawn Ilardi: That's incredible. 

Anna Jaworski: I, yeah, I didn't expect that my aphasia class would help me with my baby, but, it did.

So that was really amazing. But you are so right. And I was a tutor for many years, and most of my clients had parents who were teachers. They just could not teach their own children. They said their children were too resistant to them being in that [00:53:00] role. That they didn't want their parent to also be their teacher.

They were wise enough to know that they needed to hire a tutor. So, yeah, I worked for a lot of teachers' families, tutoring in math and reading.

Dr. Dawn Ilardi: Absolutely. we all have to figure out where our strengths are and where it's time to ask for help. 

Anna Jaworski: Yeah, that's not easy. 

Dr. Dawn Ilardi: As parents, we oftentimes put so much pressure on ourselves to be able to manage it all and be some variation of what we think is perfect.

It's gonna be much easier on your ability to be mom if you're not trying to do more than you need to in terms of these different roles. Because so many children with CCHDs have access to multidisciplinary supports, there may be much more at your fingertips than you realize.

I want to encourage families to ask their teams. If they have concerns, ask them what's available in their institutions [00:54:00] locally. Sometimes there's grant funds or other internal programs, for various neurodevelopmental concerns or parent supports that would not be a high cost. 

Anna Jaworski: And also, some of the universities, like the university I went to, Our Lady at the Lake, they had a sliding scale fee basis for the children. A lot of the children we saw were children from disadvantaged families, and yes, graduate students, were working with them, but trust me, we graduate students really wanted to do the best we could with those kids, and we put a lot of time and effort into working with them.

We were reading all of the latest research that was being done and we were supervised by people who were already certified. Even if you are going to something like a university outreach clinic, that could be exactly what your child needs without breaking the bank. Friends, the neurodevelopmental outcomes of our children with CCHDs is an area that is [00:55:00] just exploding with research right now. Mm-hmm. And there is a lot more available today than ever before. So thank you, Dr. Ilardi, for coming on the program today. This was fascinating. 

Dr. Dawn Ilardi: Thank you so much, Anna. I always love talking to you and there's always going to be more to talk about, always more to learn from our scientific community. Thank you.

Anna Jaworski: Absolutely. That does conclude this episode of Heart to Heart with Anna. Thanks for listening today. If you found today's show helpful, please consider being a Patron or a supporter of our podcast. 

For the cost of a cup of coffee once a month, you can help us continue to provide free programming to the CHD community. Thanks so much for listening. Please check out our website, heartsunitetheglobe.com to be a supporter. And remember my friends, you are not alone. [00:56:00]