Mental Health and Complex Care Children

Podcast Transcript

Speaker 4:

Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time. In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now, here's today's host.

Dr. Mayme Marshall:

Welcome back to Little Health. I'm your host, Dr. Mayme Marshall, a Pediatric Cardiologist at Cleveland Clinic Children's, and the Director of Patient Family Experience for the Division of Cardiology and Cardiovascular Medicine. Growing up is hard enough, add in complex medical diagnosis like congenital heart disease and the challenges multiply. Today, as part of our season on pediatric cardiology, we're discussing the behavioral and emotional hurdles children with complex medical conditions can face. Our guests today are Dr. Abby Demianczyk, a pediatric psychologist at Cleveland Clinic Children's.

Dr. Abby Demianczyk:

Hi there. Thanks for having me.

Dr. Mayme Marshall:

So happy to have you. And as part of our series on pediatric cardiology, we are teaming up with our healthcare partners. This group offers a team approach, including medical providers, parents, and patients that analyze and advocate for a better healthcare experience. We welcome our healthcare partner, Heather Oreh. So, we're so happy to have you, Heather.

Heather Oreh:

Oh yes. Thank you so much for having me. I'm Heather, I'm a mother of two, including one heart warrior and one heart healthy.

Dr. Mayme Marshall:

Wonderful.

Dr. Abby Demianczyk:

I'm Abby Demianczyk. I am a Pediatric Psychologist here at Cleveland Clinic Children's, and I co-direct Neurodevelopment and Psychosocial Wellness within Pediatric Cardiology. So, I see all patients who have cardiac conditions in some way, shape, or form.

Dr. Mayme Marshall:

Wonderful. As we prepared for this episode and asked parents of congenital heart disease community what topics they were interested in, mental health came up time and time again.

Dr. Abby Demianczyk:

Yes.

Dr. Mayme Marshall:

From your experience, Dr. Demianczyk, uh, what are children and families struggling with the most?

Dr. Abby Demianczyk:

So, uh, I would say that there's not necessarily one thing that stands out, but I certainly hear lots of themes. Um, because each person's journey is unique and so there can be different things for each different patient and their family. But when I think about the themes that I hear from people, one of them is definitely feelings of isolation. So, I often meet kiddos as patients and or their family who don't know anyone else who has congenital heart disease. And so, they might feel like they're the only person going through this, even though we as providers know that they're not because everyone we know, um, and our professional life really has congenital heart disease.

Dr. Mayme Marshall:

Most common-

Dr. Abby Demianczyk:

Right.

Dr. Mayme Marshall:

... uh, congenital defect.

Dr. Abby Demianczyk:

Right.

Dr. Mayme Marshall:

One in 100. (laughs)

Dr. Abby Demianczyk:

Yes. Um, and so that's a very common thing that I hear that just, you know, it's such a, it feels like such a unique experience to them. And then if they have the opportunity to meet other people, that it can be very affirming and reassuring that other people are going through the same thing. Other themes that I think I hear or things that people tend to struggle with is a little bit with like questioning why me and why this has happened to me or my child. Um, and then just struggling with the unfairness I'll say, of managing their disease and like all of the associated care and restrictions that might be in place related.

Heather Oreh:

So yeah, one of the things with having a child with such a complex medical diagnosis is the daily routine is very much affected. For example, like a minor setback in routine would be homework assignments. So, during cold and flu season, there's going to be a lot more added homework and a lot more added stress trying to make up just your general routine missed absences that tend to be a lot more higher than your other population of kiddos. And like a major example is a patient who is waiting for a heart transplant, for example, or, um, a surgery and they need tutoring that has to now come in place for a long hospital stay.

These setbacks are just a small glimpse into children with heart defects. And so, it definitely takes a pretty heavy mental load.

Dr. Abby Demianczyk:

It certainly can, but what could feel like a little impact can very quickly snowball-

Heather Oreh:

Yeah.

Dr. Abby Demianczyk:

... to become much bigger.

Heather Oreh:

I, I at least feel me personally, my experience dealing with a kiddo who is a little compromised during flu and cold season on a, you know, yearly basis. And then all the other little daily extra nuances that have to come involved in order to take care of them each day. Especially, um, for my son he has a G-tube. And for his experience, he had a 504 plan and implemented G-tube feeds while he was at school. And even just our social activities, especially when you have, um, a kiddo who has a G-tube, the, the social activities, everything revolves around the feeding schedule.

Everything that needs to take place for the whole entire family revolves around that feeding schedule. And so, it's um, a lot, lot of sacrifice esp-, even, even on just the daily maintenance of living, there's a lot of sacrifice in place.

Dr. Mayme Marshall:

I think it's a really nice example of the isolation that Dr. Demianczyk mentioned.

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

How old is your son again?

Heather Oreh:

Now, he's 11.

Dr. Mayme Marshall:

He's 11. So most 11-year-old kids, you're not stressed about a feeding-

Heather Oreh:

Yes.

Dr. Mayme Marshall:

... schedule like you are maybe an infant (laughs) that needs to feed every so often.

Heather Oreh:

Yes.

Dr. Mayme Marshall:

And so, that alone I'm sure can make him feel different than other 11-year-olds, not alone to mention that he has a scar on his chest and a-

Heather Oreh:

Right.

Dr. Mayme Marshall:

... feeding tube. Um, you know-

Heather Oreh:

Right.

Dr. Mayme Marshall:

... these different marks on his body, you know, I, I can definitely imagine make him feel isolated.

Heather Oreh:

Yes. Yes. So, piggybacking off of isolation, Johnny will not, does not want to be taken away from the classroom in order to give those G-tube feeds and it was a big deal. Thankfully it only was a couple of years out of his life, I believe only two or three school years. But it taps into the isolation because he's being pulled away from his classmates, he's being pulled away from the routine and he didn't like that added attention.

Dr. Abby Demianczyk:

I think that's a pretty normal reaction. I think a lot-

Heather Oreh:

Yes.

Dr. Abby Demianczyk:

... of kids feel that way. That's a potentially an opportunity to work with the school when you think about a 504 plan too of is there any way, and this depends on how old the child is and what their schedules look like. But is there any way to organize their schedule in a way that it works? So, maybe he's in an elective or in a special that makes core class that he doesn't care as much about or is easier to step away from to then time or coordinate those feed. Same with working with the team who has him on a certain schedule.

Could we be flexible and shift something here versus there to best accommodate his schedule just to reduce those feelings whenever possible? Because I think that gets at that idea of just a little bit of why me, and then why do I have to deal with this and juggle all these things when no one else has to?

Heather Oreh:

Right, right.

Dr. Mayme Marshall:

I love that idea of using a mental health expert like yourself, Dr. Demianczyk and integrating it with the school, um, to create this holistic care for the child. Um, even though he does have complex medical needs, you can still do it with his emotional and behavioral, um, wellbeing kind of at the forefront of your mind. Um, it plays really nicely with what we talked about with Michelle Hughes with the kind of the different plans on a couple episodes ago, but I think that's a really good point about how the mental health aspect really plays into those, um, educational plans as well. So, a question I guess for both of you, um, Heather, when did you start noticing behavioral or mental health difficulties with your own son?

Heather Oreh:

Yeah, with my son Johnny, I'm taking you guys all the way back to childhood, you know, and toddlers, oh, you know, terrible twos. My John did not have terrible twos. He kind of missed that phase and if you will, had the terrible fours. But at four years old is when I started to notice him having some behavior issues. And even before then actually he would hit his head on the floor. But I know that was like a common behavior across all boards with little, little kiddos. And then we started trying to build a relationship with a therapist for him when he was six and that was a little too young.

Um, he's now 11 and we've been actively seeing Dr. Demianczyk for the last year and a half, two years. But I will say having a cardiac focused therapist is imperative, especially this journey, it's a very narrow journey. It's a journey only so many of us walk.

Dr. Mayme Marshall:

Mm-hmm.

Heather Oreh:

And our children, there's only so many, um, surviving children with congenital heart defects or congenital heart disease.

Dr. Mayme Marshall:

Having the expertise of someone who is familiar with lots of patients, um, that have congenital heart disease has been really helpful it sounds like for your experience. 

Heather Oreh:

And really the biggest thing that I've learned in my journey with my son is that it isn't what you think that you take your child to a therapy doctor's appointment and that therapist is talking to your child directly about anything and that is not the case. Um, it might be the case for maybe some, um, older kiddos, but especially the younger kiddos. It is the therapist giving the parent the tools they need on a daily basis to help and support their child.

Dr. Mayme Marshall:

Yeah, that's great. What, what are, um, if you mind me asking, what are some of the things that you've learned, um, that have been helpful for you?

Heather Oreh:

Uh, one of the biggest thing, and I think we all can take this and our, and put it in our pocket, is you cannot control someone else. Um, your children, you cannot control them. But it's about how you handle the situation. It's about what, what are you going to do with the behavior that's in front of you and your child. It's a characteristic you have to learn and you, you have to learn how to be calm. Um, you have to learn how to listen. And of course, me personally, I'm always trying to put myself in his shoes and try to see where he's coming from and where possibly the behavior really is coming from.

Dr. Mayme Marshall:

Mm-hmm. And it seems like it's a practice, right? It's not something that you're expected to, uh, stick the landing the first time. It's something that you're continuing to practice those skills.

Dr. Abby Demianczyk:

Yeah, I think that's a great takeaway. This idea that we can't force change, but we can facilitate change-

Heather Oreh:

Right.

Dr. Abby Demianczyk:

... and we can support change. Um, and we can see a difficulty or something our, your kid is struggling with and say, "I wanna help them navigate this differently and connect with the people who might be able to be most helpful."

Heather Oreh:

Right. And going to a therapist gives you the tools you need to be more successful to, to help your kiddo get their coping mechanisms at a better spot. Um, a lot of children with, um, congenital heart defects, they lack the coping mechanisms that they need and they're a little bit more sensitive to a, a lot of things, whatever it may be. A lot of patience, a lot of patience and um, my biggest thing that I've learned is just to stay calm and, um, utilize certain practices that will help, um, a bad moment.

Dr. Mayme Marshall:

What do you do? What are those practices when you're like, you're in it, you're feeling red hot, you're ready to (laughs), you're a ticking time bomb, you're about to explode? Like what brings you your inner ohm?

Heather Oreh:

At least for me, I have to learn because especially when someone, even your own child who is 11, that goes from zero to 100 in a matter of one second. It's in, it's a lot, it's a lot for anyone to take. It's a lot for someone to swallow that and absorb that. And so, immediately your natural human instinct is to defend yourself. And that, how do you defend yourself is key. How you go through that defending yourself is uh, it's because you gotta be able to take yourself back and look at the situation and ask yourself really where's this behavior coming from?

Dr. Mayme Marshall:

Mm.

Heather Oreh:

And also, the biggest key that I've learned is not to take it personal.

Dr. Abby Demianczyk:

Mm-hmm. I was just gonna say one that I use as a parent myself is like, this is not about me. Like it's not actually about me.

Heather Oreh:

Right.

Dr. Abby Demianczyk:

You know, this kiddo figuring something out. Um, and then I kind of like the idea of like, they're just babies. Even an 11-year-old, they're new to all of this-

Heather Oreh:

(laughs)

Dr. Abby Demianczyk:

... they're figuring things out. They've never had these experiences before.

Heather Oreh:

Yeah.

Dr. Abby Demianczyk:

So, they're, they're, they don't know what to do. And it's not about me, I'm just the person that's here.

Heather Oreh:

Right.

Dr. Abby Demianczyk:

Receiving some of this right now.

Heather Oreh:

Receiving that energy. Yeah. Yeah.

Dr. Mayme Marshall:

And they're looking for you to regulate-

Heather Oreh:

Yeah.

Dr. Mayme Marshall:

... their emotions for them.

Heather Oreh:

Yes, yes and very much so.

Dr. Mayme Marshall:

Providing that calm is such a gift, you know, to your child who's feeling dysregulated in the moment.

Heather Oreh:

Yeah. So, for-

Dr. Mayme Marshall:

How-

Heather Oreh:

... for me, staying calm and sometimes-

Dr. Mayme Marshall:

How do you stay calm?

Heather Oreh:

... sometimes you have to leave.

Dr. Mayme Marshall:

(laughs) Yeah.

Heather Oreh:

Sometimes you have to leave the situation and you can say that and that's okay. And you can say, "Okay Johnny, I will be back in two minutes, I need to have my moment." And then you come back and you try to figure out how to mitigate the situation the best you can.

Dr. Mayme Marshall:

Yeah. So, taking a pause I think is an important tool for people to have.

Heather Oreh:

Slowing down time. It's okay to slow down the time and taking a couple breaths of fresh air or whatever you need to do to just bring the heart rate down, bring the defensive mechanism down and, and tell yourself, this is not about me.

Dr. Mayme Marshall:

Yeah. Calming your own nervous system. (laughs)

Dr. Abby Demianczyk:

Yeah. We wanna get to the, the stage-

Heather Oreh:

Right.

Dr. Abby Demianczyk:

... of being able to respond-

Heather Oreh:

Right.

Dr. Abby Demianczyk:

... versus just to react immediately-

Heather Oreh:

Right.

Dr. Abby Demianczyk:

... and sometimes take a break, step away, take some breaths, re-center, come back-

Heather Oreh:

Yes.

Dr. Abby Demianczyk:

... to a discussion later.

Heather Oreh:

Yes.

Dr. Abby Demianczyk:

Anything like that.

Heather Oreh:

Yes.

Dr. Mayme Marshall:

What else is in the toolkit that you try to equip parents with in those moments?

Dr. Abby Demianczyk:

This, we're talking a lot about behaviors, I think right now and regulation.

Dr. Mayme Marshall:

Mm-hmm.

Dr. Abby Demianczyk:

And so, the other like core strategy that I think a therapist can help with is trying to understand why some behaviors occur or exist and like what's driving those behaviors. Because we want to do as much as we can to be preventative, um, and look at like what is contributing and can we change, um, the situation in general so this doesn't even happen so we don't have to get to that point. So, do we need to validate a kid's feelings to help them feel heard so they don't get escalated trying to feel heard, you know, something happening for them from a sensory perspective that's very irritating that maybe we can address and they won't have the same reaction in that situation.

So, I think that would probably be the other piece of just what else can we do beforehand, um, to prevent a behavior and then what happens when behaviors do occur and how can we react and respond in a way that reduces the likelihood of that behavior continuing and hopefully promotes something more adaptive in its place.

Heather Oreh:

And I would like to add that the preventative work is where a lot of the work really does come from. You have to do the preventative work before you're in those heightened situations.

Dr. Mayme Marshall:

Yeah. And I think one of our goals in doing this episode was just to highlight how prevalent this is.

Heather Oreh:

Yes.

Dr. Mayme Marshall:

The kids with congenital heart disease like do struggle with behavioral issues. They do struggle with mental health, um, challenges. And just to kind of acknowledge, um, those struggles is the first step in helping kids learn the skills, helping the parents learn the skills to kind of live a happier (laughs)

Heather Oreh:

Yeah.

Dr. Abby Demianczyk:

... functional, (laughs) um, um, life. So-

Heather Oreh:

Yes, yeah.

Dr. Abby Demianczyk:

Heather, like you shared Johnny's journey and I was just gonna highlight that really these behavioral health or, or mental health concerns can pop up at any age.

Heather Oreh:

Mm-hmm.

Dr. Mayme Marshall:

Mm-hmm.

Dr. Abby Demianczyk:

And I actually work in a number of different clinics where we do universal screening for patients who we think are probably at higher risk in general. So, I see everyone regardless of an identified concern or not just to screen and talk about and make families aware because some people aren't as aware that this could be associated with their child's congenital heart disease. So, it really can happen at any age. I do feel like a common timeframe for referrals, like after the kiddos had a major hospitalization where they maybe haven't had one in a long time or haven't had one within their memory or before or after a surgery. I love to get them before surgery, but sometimes they also happen after surgery.

Heather Oreh:

Right, right.

Dr. Mayme Marshall:

And you kind of talked a little bit about some like multidisciplinary clinics that you're involved in. What are some of those clinics that the mental health is just a part of the team?

Dr. Abby Demianczyk:

Yeah. So, some of the clinics would be like our Fontan Frontier Clinic. So, that's for patients who, um, have single ventricle anatomy after they've had their Fontan procedure. We also recently started, um, a transplant clinic called the Thrive Clinic. I'm embedded in both of those. The one that's probably more universally, uh, accessible is a neurodevelopmental support program or NDSP. This is a program for cardiac patients who they can come through, it's a multidisciplinary clinic and we follow kids not from birth. It's like six months through the transition out of high school.

And we, we see them every few years a little bit more frequently in the beginning, but we're doing developmental assessments, but then also monitoring all these different social emotional areas so that we're tracking regularly to see if concerns are coming up. And then we can pause and figure out a little bit like why do we think this concern is here and what's the most appropriate referral source? Sometimes it is behavioral health, but other times it might be more comprehensive assessment or occupational therapy or psychiatry or something else.

Dr. Mayme Marshall:

Mm-hmm. So, something that's impacting their quality of life or their mental health, but something that's intervenable-

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

... with improving their mobility or functional-

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

... day-to-day activities.

Heather Oreh:

And I would like to add that that program was very well done. It's very thorough and very comprehensive. And, uh, my son John, we just had one of our first initial clinic appointments for that program, uh, a couple months ago. So, um, I'm looking forward to the next, a little bit of testing that we need to do. But so far, we've had a lot of positive feedback and that's, that's reassuring.

Dr. Mayme Marshall:

That's wonderful.

Heather Oreh:

Yeah.

Dr. Mayme Marshall:

I'm glad to hear you've had a good experience.

Heather Oreh:

Yes, yes.

Dr. Mayme Marshall:

One of, as a fetal cardiologist who diagnoses, you know, heart disease before babies are even born, I always like to get you involved Dr. Demianczyk, um, because this is just, I can't imagine a more stressful period-

Dr. Abby Demianczyk:

Yes.

Dr. Mayme Marshall:

... of one's life, um, when you're already going through the stresses of a pregnancy, even on a normal pregnancy is very stressful.

Dr. Abby Demianczyk:

Right.

Dr. Mayme Marshall:

But then you have this added diagnosis that's, um, just an extra weight on a family's shoulders. What are some of the common things that you hear families tell you just about that experience and what it's like to receive a prenatal diagnosis?

Dr. Abby Demianczyk:

Yeah, so I, I do do fetal consults. I really have no agenda for any one of those consults because I, I don't know what a family is gonna come in with or what their needs are gonna be. But some common themes definitely do emerge and I think it would be certainly fear, fear of unknown, and then fear while waiting and just wanting to kind of be on the other side of delivery to know how is this all going to play out and what's gonna happen.

Dr. Mayme Marshall:

Mm-hmm.

Dr. Abby Demianczyk:

Um, and so it's, it's tough to receive that. It's, it's good to receive the fetal diagnosis because now you have time to plan and prepare. But it's tough because now you have to sit here and wait while you also plan and prepare for things that aren't in your control and you don't know how they're going to play out. The other thing that I definitely hear on the fetal side, but then also kind of early after delivery is just coping with other people having like the pregnancy and delivery and newborn experience that you expected, but then now don't get to have-

Dr. Mayme Marshall:

Mm-hmm.

Dr. Abby Demianczyk:

... um, and have a very different experience with. And, and then also probably some like guilt around having those feelings. So, I think, I don't know, 80% of my job is just normalizing feelings and (laughs) whatever they might be in any given situation.

Dr. Mayme Marshall:

Yeah. That's very nicely said.

Heather Oreh:

Just from my personal experience that I would like to share. The first two things that I thought of when I was first initially diagnosed in uro-, utero is number one, the question is where's the financial support? And then the second question I asked, um, my fetal echocardiologist was, uh, where's the emotional support?

Dr. Mayme Marshall:

Yeah.

Heather Oreh:

You know, and that's when it got me tapped into the non-profit groups that helped me. And of course, like the financial support that you need to get through that journey. It's a, two good questions to ask after a diagnosis that big.

Dr. Mayme Marshall:

What were some of those groups that helped support you during your pregnancy?

Heather Oreh:

For me it was Mended Little Hearts and the Children's Heart Foundation. I met some moms there that I absolutely needed. Um, there was big pivotal moments in the hospital when John was, Johnny was firstborn, that if I didn't have those resources or some of that advice to, to know some information before our journey started, it would, it was, it was rough. Very, very, very rough in the beginning.

Dr. Mayme Marshall:

Yeah. I think in the same theme that we talked about of children with congenital heart disease, that theme of isolation.

Heather Oreh:

Mm-hmm.

Dr. Mayme Marshall:

I think it's a, a, a theme that I've seen play out, um-

Heather Oreh:

Yes, yes.

Dr. Mayme Marshall:

... in a lot of the parents that I've, I've cared for as well. Speaking with parents and supporting parents from patient family experience is one of the things is that how, um, how they lose friends with a diagnosis of complex medical kits. Is there any like advice or support or how do you help support families, um-

Heather Oreh:

Yeah, because you're-

Dr. Mayme Marshall:

... in those situations? Or what have you learned from it, Heather?

Heather Oreh:

Well, just-

Dr. Mayme Marshall:

What would be your advice to a mom who's maybe-

Heather Oreh:

Yeah.

Dr. Mayme Marshall:

... going through an experience and, and not having that close relationship that they thought they could rely on?

Heather Oreh:

Well, right. Um, because your immediate family, uh, the family that lives with you, um, it, a diagnosis of congenital heart disease affects the whole entire family. It's not just an individual diagnosis, it's, it affects the whole family. And there's, um, certain safeguards and procedures you have to, to put in place first when you bring a baby with, um, a heart disease into this world. And it affects, uh, it affects your daily dynamic and the family has to gather around and, and support and do whatever it takes to support each other and the child that's diagnosed.

And then you have your family around you that lives outside the home, you know, that immediate family. And, and of course, before you're discharged from the hospital when they're first newborn, there's a process that you take to make sure that you're able to take care of your kiddo and all the support that they need. But then the extended family that's going to be around the kiddo with, uh, the diagnosis, they also have to be educated and aware because it's serious stuff. And, um, you have to have your tools and resources and know what you should and should not do. Because there are things that you shouldn't do versus, um, a heart-healthy kiddo.

Dr. Mayme Marshall:

Yeah. One of the things that I think has been interesting to me as, as a medical provider, you know, I have a lot of blind spots of what it's like to be a mom or a loved one of someone with congenital heart disease. But of the amazing support that the congenital heart disease community provides each other. And, um, I've heard you say it a lot, Heather, with your-

Heather Oreh:

Yes.

Dr. Mayme Marshall:

... experiences, if there's been certain pivotal people in your life that have really like mentored and coached you and supported you through those pivotal moments. Um, what would be your advice to families who are feeling isolated or going through this process right now?

Heather Oreh:

Well, right in the hardest moments, the only the heart moms pulled me out of those moments, only they did. When you have a child born with any condition for that matter, you have to find the parents that are involved and they can help you give some, some experiences and, and shed some, um, light on what worked for them and what helped them get through. Because I do know that some of my big hospital admissions, I would have not gotten through it as smoothly if I didn't have some of that advice sent to me before.

Dr. Abby Demianczyk:

Yeah. I definitely always try to provide like some of the resources that you mentioned, connection with and, and share with families that not everyone wants to connect right away because some families don't necessarily want to-

Dr. Mayme Marshall:

Absolutely.

Dr. Abby Demianczyk:

... um, and they do actually want to wait. And so, I, I talk through that with them, that like this is your choice to decide when you might wanna connect, but many people find it beneficial-

Heather Oreh:

Yeah.

Dr. Abby Demianczyk:

... um, and that it like really helps put your journey in context a little bit and understand that other people are going through similar things. I also provide resources to, um, Postpartum Support International. It's an international organization for perinatal mental health. And they have tons of resources including regional coordinators that will connect you with providers that have expertise working with people during and after pregnancy-

Heather Oreh:

Mm-hmm. 

Dr. Abby Demianczyk:

... mothers and fathers. Um, and they have online support groups for like every iteration of thing that you can think of, including medically fragile children. So, even if they don't want to necessarily delve into the world of the heart community, they might have another resource where they can start and have people to turn to.

Heather Oreh:

Mm.

Dr. Mayme Marshall:

Yeah. A common question I ask the patients and families that I'm seeing is, how are you doing? What support do you have? Where-, and so I can just learn about what, what different organizations are out there and especially in our community and it, it does, um, I'm someone who loves to connect and share and talk and feel (laughs), um, but not everyone's built like me.

Heather Oreh:

Right, right.

Dr. Mayme Marshall:

And, um, and so I always do find it interesting when families, um, you know, do not wanna be involved with congenital heart defect, other families, they don't wanna take on the burden of another someone's story.

Heather Oreh:

Right.

Dr. Mayme Marshall:

Which is completely acceptable and okay.

Heather Oreh:

Right.

Dr. Mayme Marshall:

And so, it's always good to hear that too, is maybe you're not the type of person that wants to connect with others and that's okay. And a lot of people have very supportive families, um, that can kind of help them, um, you know, process their emotions-

Heather Oreh:

Mm-hmm.

Dr. Mayme Marshall:

... and bear some of that burden, um, as well.

Heather Oreh:

Dr. Abby, I would like to ask, what are your thoughts and advice for children when they realize they have differences compared to their peers?

Dr. Abby Demianczyk:

That's a good question. I, I would say I really, I really wanna just highlight that it's okay to notice and even celebrate the differences that they're picking up on. I think at times parents are understandably quick to like jump in and provide reassurance or to try and downplay the difference and kind of send the message of like, it doesn't impact you as much or you're just as capable, things like that. And I totally understand that idea and that mentality. I also work with a lot of adults who have congenital heart disease, who I feel like one of the things I'm picking up on from them as a group is that messaging is also somewhat difficult.

Because they have times in life or experiences where having congenital heart disease really does impact them. Um, whether its time missed in school or having to take a break when they're in college because they have a surgery or feeling like they can't pursue a career that they would like to pursue. And so, sometimes I hear this, this idea of like being behind or not being as successful, and when I'm sitting there listening to their story, I'm like, "Yeah, but here, like I understand why. Here's what's happening. It's not a failure on your part like you were just admitted for three weeks or something."

Heather Oreh:

Mm-hmm.

Dr. Abby Demianczyk:

Um, so I think we have to find the balance of identifying and acknowledging the differences that might be there, okaying them, okaying the kiddo not being super happy about those differences. Um, and allowing those feelings to be, and just also acknowledging how it might impact them. And you know, always still saying, "We wanna figure it out and we'll figure out how to do this thing that you'd like to do, even if we have to approach it a little bit differently."

Heather Oreh:

Mm-hmm.

Dr. Abby Demianczyk:

But I think that could be protective longer term so that they're not like older and feeling like there's no reason why they might have taken longer to do something or something might be hard for them when we might have a reason why it could be hard for them.

Heather Oreh:

Right. Right.

Dr. Mayme Marshall:

So, I, I guess I wanna highlight some of the programs that are out there that help bring congenital heart kids together and help them be "normal."

Heather Oreh:

Mm-hmm.

Dr. Mayme Marshall:

So, like the TJ Carrie Foundation has Camp Carrie coming up. That's actually a whole family camp-

Heather Oreh:

Yeah.

Dr. Mayme Marshall:

... which is an awesome opportunity to build some community with other heart families. Um, TJ Carrie also does a, um, heart run/walk that's coming up. Us at Cleveland Clinic Children's, we are gonna be doing our third annual patient family day at the zoo. So, which is another really fun opportunity to get together to meet other heart families and patients. The Congenital Heart Foundation walk is every fall.

Heather Oreh:

Mm-hmm.

Dr. Mayme Marshall:

Another fun opportunity to get together. So, oh, I, oh my gosh, I would be so amiss to not (laughs) to not mention, um, Flying Horse Farms.

Heather Oreh:

I was about to just say that.

Dr. Mayme Marshall:

Yeah.

Dr. Abby Demianczyk:

I would've had you covered too.

Dr. Mayme Marshall:

(laughs)

Heather Oreh:

Yeah, so it's fine.

Dr. Abby Demianczyk:

Yes. (laughs)

Dr. Mayme Marshall:

Um, I had the huge honor to be one of the camp physicians last year, um, and what an incredible magical place where kids are swimming and fishing and singing karaoke and doing little dances before and after every meal. And if you have any worry that your kid is not able to be a kid, send them to Flying Horse Farms. (laughs)

Dr. Abby Demianczyk:

I haven't been to this camp, but I've been to Heart Camp before and it's the best thing ever.

Dr. Mayme Marshall:

Yeah.

Dr. Abby Demianczyk:

Everyone should do it.

Heather Oreh:

And it's, it's funny because my Johnny is now 11 and it is something that is on my radar, but you know, he has to find his confidence to go alone. That's gonna be the only thing really holding him back. But it's like, how do you tell a kiddo like, "Hey, get rid of those nervous, you know, you're gonna have a blast." But I need to get him there. (laughs)

Dr. Mayme Marshall:

Yeah. Yeah. So, probably working with someone like Dr. Demianczyk-

Heather Oreh:

Yeah. We talk about it. (laughs)

Dr. Mayme Marshall:

... um, to kinda get that pre-contemplation ideas or what it might be like and to kind of-

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

... to think about practicing some of those skills that he might need to have-

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

... at camp. But-

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

... Flying Horse Farms. (laughs)

Dr. Abby Demianczyk:

Yeah.

Dr. Mayme Marshall:

Any other things that you, pearls that you wanted to kind of pull out of this?

Dr. Abby Demianczyk:

I think I'll just say that, you know, there's never too small of a concern to seek out additional support. And it might just be reassurance like, "No, this is totally normal and age appropriate and keep doing what you're doing." Or it could be, "Here's how, what might be helpful." So, um, don't be afraid to ask for more help and support, uh, and you can bring your concerns to cardiology and they can get you referred if you need to.

Dr. Mayme Marshall:

Absolutely. I think that's a really important piece of advice. Heather, do you have any other pearls of wisdom or final thoughts?

Heather Oreh:

My best advice is to find your village and find your support group. And that doesn't have to just be family, it can be friends and then those friends can become family.

Dr. Mayme Marshall:

Yeah. I think-

Dr. Abby Demianczyk:

Very true.

Dr. Mayme Marshall:

... it's another good plug for our healthcare partners organization-

Dr. Abby Demianczyk:

Oh, yes.

Dr. Mayme Marshall:

... because I think we have been able to build a really dynamic, supportive community and we are always looking for more people to join our party. Um, we are forced to be reckoned with-

Dr. Abby Demianczyk:

Yes.

Dr. Mayme Marshall:

... that are making Cleveland Clinic the best place to receive care, the most patient centered. Um, and that in huge part is just because of our very dedicated patients and families like Heather, um, who give us their time and their feedback to, to help us continue improving the model of care that we provide. Uh, and Heather, thank you so much for being here. Can you tell us a little bit about how to get involved with Healthcare Partners?

Heather Oreh:

Yeah. Healthcare Partners, it's a great group of parents who want to advocate for their little ones. And if you would like to get any more information, you can email childrenshealthcarepartners, Children's Healthcare Partners is all one word@ccf.org.

Dr. Mayme Marshall:

Wonderful. Thank you so much.

Heather Oreh:

Thank you.

Dr. Mayme Marshall:

Thank you for joining us today. We hope you've gained a better understanding of the behavioral health challenges faced by children with congenital heart disease and other complex medical conditions. If you'd like to schedule an appointment with a Cleveland Clinic Children's Pediatric Cardiologist, please call 216.445.5000.

Speaker 4:

Thanks for listening to Little Health. We hope you enjoyed this episode. To keep the little health tips coming, subscribe wherever you get your podcasts. Or visit clevelandclinicchildrens.org/littlehealth.