Heart to Heart with Anna

Navigating the Emotional Landscape of Raising Children with Congenital Heart Defects

April 23, 2024 Kelsi Rogers Season 19 Episode 444
Navigating the Emotional Landscape of Raising Children with Congenital Heart Defects
Heart to Heart with Anna
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Heart to Heart with Anna
Navigating the Emotional Landscape of Raising Children with Congenital Heart Defects
Apr 23, 2024 Season 19 Episode 444
Kelsi Rogers

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When your child's heartbeat is a symphony laced with irregularities, every moment becomes a measure of uncertainty. This is the world heart moms like myself, Anna Jaworski, and my guest Kelsi Rogers live in every day. Join us as we peel back the curtain on the mental marathon of raising children with congenital heart defects (CHD). Our raw conversation plunges into the depths of hypervigilance, the delicate nature of our children's health, and the language that both describes and defines their conditions. Sharing from our hearts, we expose the often-unspoken mental toll of the constant fear and the struggle to find a semblance of normality while fiercely protecting our children's lives.

The battle doesn't end with personal struggles; the war against CHD is fought on the frontlines of research and advocacy as well. In this heartfelt exchange, Kelsey and I explore the gap in CHD research funding and the misleading statistics that mask the true prevalence of these heart conditions. We dissect the critical need for comprehensive newborn cardiac screening to catch these silent afflictions early, recounting stories that underscore the urgency and importance of this cause. Our plea for increased education and advocacy rings clear, with a hope to catalyze change in how CHD research and screening practices are approached and executed.

Concluding on a note of hope, we cast a light on initiatives forging paths towards groundbreaking treatments, including the exciting prospects of in-utero solutions and the creation of privacy-preserving registries for targeted research through HeartWorks. By sharing personal anecdotes, we underscore the severity of electrical heart issues and rally for greater support and recognition. It's not just a podcast; it's a community coming together every Tuesday at noon Eastern time, sharing a commitment to empower and support the CHD community. Your participation breathes life into our mission, reinforcing the collective heartbeat of families touched by congenital heart disease.

Links mentioned in this podcast:

HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot

HeartWorks: https://www.hlhsconsortium.org/heartworks/

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new


& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

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Anna's Buzzsprout Affiliate Link

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When your child's heartbeat is a symphony laced with irregularities, every moment becomes a measure of uncertainty. This is the world heart moms like myself, Anna Jaworski, and my guest Kelsi Rogers live in every day. Join us as we peel back the curtain on the mental marathon of raising children with congenital heart defects (CHD). Our raw conversation plunges into the depths of hypervigilance, the delicate nature of our children's health, and the language that both describes and defines their conditions. Sharing from our hearts, we expose the often-unspoken mental toll of the constant fear and the struggle to find a semblance of normality while fiercely protecting our children's lives.

The battle doesn't end with personal struggles; the war against CHD is fought on the frontlines of research and advocacy as well. In this heartfelt exchange, Kelsey and I explore the gap in CHD research funding and the misleading statistics that mask the true prevalence of these heart conditions. We dissect the critical need for comprehensive newborn cardiac screening to catch these silent afflictions early, recounting stories that underscore the urgency and importance of this cause. Our plea for increased education and advocacy rings clear, with a hope to catalyze change in how CHD research and screening practices are approached and executed.

Concluding on a note of hope, we cast a light on initiatives forging paths towards groundbreaking treatments, including the exciting prospects of in-utero solutions and the creation of privacy-preserving registries for targeted research through HeartWorks. By sharing personal anecdotes, we underscore the severity of electrical heart issues and rally for greater support and recognition. It's not just a podcast; it's a community coming together every Tuesday at noon Eastern time, sharing a commitment to empower and support the CHD community. Your participation breathes life into our mission, reinforcing the collective heartbeat of families touched by congenital heart disease.

Links mentioned in this podcast:

HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot

HeartWorks: https://www.hlhsconsortium.org/heartworks/

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new


& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Kelsi Rogers:

I think all of us heart moms, heart parents, heart support systems, we learn to live in this state of hypervigilance and we don't even realize we're doing it.

Anna Jaworski:

Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. I'm also a heart mom to an adult who was born with a single ventricle heart and who is 29 years old. That's the reason I am the host of your program. Here with us today is Kelsey Rogers. Kelsey is the mother of Jet, who was born in October 2021 and diagnosed with ventricular tachycardia at 10 days of age. Kelsey's here today to talk about the mental health of us heart moms, because you went through some of the worst things a mother can go through. You saw your child lifeless. You had to do CPR yourself. You got a diagnosis that your child was a ticking time bomb. I received that diagnosis too. That's a diagnosis any mom should ever hear.

Anna Jaworski:

If any medical people are listening to this podcast, please don't use that term with your mothers and your fathers, because you can't unhear it. You go to bed at night worried. I used to crawl into my baby's room at night so as not to wake her and put my finger under Hope's nose just to make sure she was still breathing, because I was so afraid she was going to die if I didn't have my eyes on her at all times. And you can't. You cannot have your eyes on your baby at all times. So that expression I don't know whoever taught these doctors to use the ticking time bomb expression. It should be banned from every doctor's vocabulary ever. So you went through all of that. Then you went through seeing your baby wheeled out of surgery. He's alive, he's made it. Oh my gosh, how has having a child with tachycardia affected your state of mind? Because that's a lot to take in in a short period of time.

Kelsi Rogers:

Yeah, I think all of us heart moms, heart parents, heart support systems we learn to live in this state of hypervigilance and we don't even realize we're doing it. Everything is kind of viewed as a threat Every cough you hear, every stomach bug. You're very aware. Obviously, that's extremely challenging and that's very hard on your mental health when you don't even realize you're doing it.

Anna Jaworski:

And you kind of have to do it. You have to do it.

Anna Jaworski:

You have to do it. When you're told, oh, the common cold could end your kid in the hospital and could possibly end your child's life, of course you have to be hypervigilant. All of a sudden like you were saying with the stomach problem, oh, if our kids get dehydrated, guess what? There's an increased chance they're going to have arrhythmias. You're already dealing with arrhythmias. The last thing you want is your child to be dehydrated. So, yes, we have to be hypervigilant, and I agree with you. I don't know that you say, oh well, now I have to be hypervigilant. It doesn't need to be said when they tell you your kid's a ticking time bomb, when they tell you, oh, my gosh, your kid has this major heart problem here we're going to take your child and perform open heart surgery or an ablation. That's all that has to be said for you to know. Okay, from here on out I have to be hypervigilant.

Kelsi Rogers:

Yeah, exactly, and if you don't, your child could die Right, and that's the truth of it, is it very much is a life or death. Yeah, it's a life or death situation, and I know there are people that are able to compartmentalize.

Anna Jaworski:

It's easy to compartmentalize when it's something that has a definite beginning and end, like going to work. When I used to be a teacher, if I had a fight with my husband that day, I could go to my classroom and leave that fight with my husband at the door and walk through and I could just be a teacher. But what we're doing you can't compartmentalize because it's with you constantly. It's not like you can just say, oh, I'm going to put this on the back shelf for a while. It's not like you can just say, oh, I'm going to put this on the back shelf for a while, Because even when your baby's taking a nap, nothing could happen.

Anna Jaworski:

That's when they can go into bradycardia. I mean, we don't get a break. That's the hard part. So maybe if you have to go to work and you're leaving your child with somebody else and you have complete trust in them, I never had to do that. I was able to stay at home with my baby. So I don't know if I would have been able to. I don't think I would have been able to. Kelsey, To be honest with you, honey, I felt like my baby needed me there constantly to remind her mommy's here. You need me and I need you.

Kelsi Rogers:

Yep, yeah, my husband and I are very lucky and we both work from home, so we got eyes on him all the time A big part of seeing your child go through these things and we're one in the same, we're the same person. What happens to him feels like it's happening to me and, yeah, I trust someone else to put in the mental strain that us heart moms have. I just don't think I could. I don't think I can trust.

Anna Jaworski:

I am totally with you, kelsey, because after we had the first surgery they said well, there are two more scheduled surgeries. You didn't even think you had scheduled surgery, so it's probably in some ways harder for you, but we knew we had two more scheduled surgeries and they released us with all your babies are taking time bomb. And I said, well, do I need to move to San Antonio? Because our hospital was three hours from where we lived. We lived out in the country. There was no hospital for 30 minutes. And they said no, because even if the baby was on the table in front of the surgeon when something happened which for us it was going to be a clot in the shunt that they had put in, if the baby was on the table in front of the surgeon, the surgeon could not open the baby up fast enough to save the baby's life. So moving closer to San Antonio was not going to prevent the inevitable, if that was what was going to happen. And even after the last surgery we were like, okay, now the baby's had the Fontan, now we can live a normal life, right.

Anna Jaworski:

But you get wise when you're in the hospital days on end and that NICU or PICU, and even when you're in the step-down unit, you see things happen and you realize, no, this is not fixed, this is a lifelong condition. This is a lifelong condition and hopefully they stop using the term ticking time bomb. They did for us. They stopped using that term, maybe because they saw that I might slap them if they use it again. I'm so silent. We tell you nobody should have to hear that term.

Anna Jaworski:

Yeah, and for those of you who are out there who don't know me very well, my baby will be 30 this year in August. So even back then, when things seemed so dire and medical technology was not as advanced as it is today, miracles still happened and my child will be 30 years old. So there can be happy endings and thankfully, jet is one of those happy endings right now. He has survived an ablation, he has survived an open heart surgery, he has lived with bradycardia, he's lived with tachycardia. So he's had a too slow heart rate, he's had a too fast heart rate and he just keeps plugging right along. He's a little energizer bunny. So that's hard on your mental health. I mean, you have had one rollercoaster ride, haven't you, kelsey?

Kelsi Rogers:

Yeah, 100%, and I strongly feel like I think a lot of heart moms feel this way too. I was made to be his mom. I was made to advocate for this baby. I was made to hopefully make a difference in other people's care. He has changed me so, so astronomically. I know there's a saying like oh, if you knew me before I had a kid, you don't know me now. But that is truly how it is in this situation. If you knew me five years ago, you know nothing about me anymore, because my whole life is trying to just be so grateful and realize that things do not matter. Jobs do not matter. What matters is your family and their health. I say I'll live on the street, I'll do whatever if my baby is happy and healthy. It just doesn't matter.

Anna Jaworski:

Yeah, I agree. So what's the most important lesson that you've learned, Kelsey, from caring for a baby with an electrical problem with the heart?

Kelsi Rogers:

you ask is dumb or stupid? And connecting with other people who know what you're going through. Join the heart mom's groups on facebook.

Anna Jaworski:

Listen to the podcast yeah, kelsey and I met was. We're in a heart mom group on facebook and there was a mom who posted a concern and Kelsey answered, and her answer was so articulate. I said, kelsey, you have to come on the podcast and talk about it. So, yes, here I am. My kid's going to be 30. I still belong to a lot of different groups on Facebook because I hope that my story can be a beacon of hope for others who are going through a hard time and I want to know what struggles people are having so that on the podcast we can talk about those struggles so people don't feel alone. You're so so right. Yeah, join those groups and share your stories of hope. I think that's so, so important. And you did that to that mother. You shared your story of hope with her and I was so grateful that you did that, because that's what we need. We need to know we're not alone.

Kelsi Rogers:

Yeah, and to see heart moms in every phase of heart momming moms that are grieving that they're not having a normal toddlerhood, infancy, childhood, but then moms who are in your stage of heartmomming where they're kids and adult. Now, when I see heartmoms on there posting about oh, it's my child's 20th anniversary, I'm like that is incredible. That gives hope in and of itself.

Anna Jaworski:

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

HUG:

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 hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Anna Jaworski:

I think one of the things that bonded me to you right away, too, though, was our frustration, our joint frustration, that the American Heart Association isn't really paying attention to these babies that have heart defects. When they give the statistics oh, one in 100, friends, it is way more than 1 in 100 babies that are born with heart defects, because the American Heart Association cherry picks what defects they want to count for that 1 in 100. So they don't count bicuspid aortic valves. They don't count electrical problems there's quite a few different conditions they don't count. So it is way more than 1 in 100, which nobody wants to hear.

Anna Jaworski:

That A doctor told me. The reason why they do that is because they don't want it to look like it's an epidemic. Well, you know what? Maybe if they made it look like what it really is, we would have more funding and we would have more research, so we would have more answers for these problems. Instead, heart conditions are underfunded. We're underrepresented with the medical research. As far as the government is concerned, and even the American Heart Association, they put way more dollars into helping people with acquired heart disease than they do people like our children, who are born with their heart conditions yeah, 100% yeah.

Kelsi Rogers:

On top of that, I think about all the time how amazing would it be if every baby that was born got a cardiac screening. What would that do to potential things like SIDS or other horrific tragedies that happen just to have a quick screening when babies are born?

Anna Jaworski:

I fought with other mothers. Anna Marie Saarinen came on my program years ago and all of us joined forces to fight for them to do pulse oximetry. And now most of the hospitals here in the United States and we're encouraging it worldwide. Anna-marie Saarinen is amazing. She's been doing such a fabulous job of advocating.

Anna Jaworski:

She's also a heart mom and she goes all over the world saying a super cheap, super easy test, it's non-invasive. You put this little band-aid looking thing around the baby's finger or wherever you have to put it so that you can see what the oxygen saturation is like, so that they can catch some. That's not even the answer to everything, but it does help to catch a certain number of complex congenital heart disease patients before they go home and die of SIDS death. You're right, what if we did an echo Again non-invasive.

Anna Jaworski:

If my baby would have had pulse oximetry, if my baby would have had an echocardiogram, I would not have lived with my baby for two months saying something is wrong, knowing in my heart something is wrong, taking my baby back and forth to the hospital for them to tell me not yellow enough for the belly lights, just a sleepy head because he was born three months early, excused away every concern I had. Had they just done pulse oximetry or an echo, we would have known way sooner and my child would not have gone into congestive heart failure. But things happening for a reason. My child's going to be 30 this year. I guess part of me is still traumatized by the fact that there was something that would have been so easy. Even just a chest x-ray again super cheap. Even just a chest x-ray might have tuned them into the fact that the left side of the heart was kind of missing.

Kelsi Rogers:

You know how they missed that Right. Well, and I think about too is I say this for the launchings and healthcare. If I were asked even before having jet, hey, do you want to spend more money to get a cardiac screening to make sure everything's all good with your baby? I would have been like yes, yes, I do. I think that is the case a lot of people. To just have peace of mind, to be like, oh, I have a heart, healthy baby, or I am about to continue on a heart journey.

Anna Jaworski:

You know, I it's tough, Well it is tough because, to be fair, there are babies that are born with liver problems, the kidney problems, and how many scans do you want your child to have? But the situation is that birth defects are the number one birth defect. It's the number one birth defect and how many people outside the CHD community know that? Not enough, right, in my opinion, not enough. So if you were told the number one birth defect is heart defects, would you like to have a screening done? Because that's the number one birth defect and it's the number one cause of death among newborns for congenital reasons, you better believe I'd sign up. What? Yes, absolutely. Do congenital heart defects run in your family?

Kelsi Rogers:

No.

Anna Jaworski:

See. Likewise, we did not have a family history of congenital heart disease. So 30 years ago if somebody was said to me, do you want to have this screening? And I didn't know that heart conditions were a problem and they don't run in my family, I might have said no because I was uneducated. Now I know better. But my baby had that PKU test that they do on all babies, where they stick them in the heel of their foot to test for that. That's a way less incident that happens to wireless babies and heart defects do. So why is it they do some of these tests but they do not screen adequately for heart defects? I agree with you 100%. I agree with you Well, and you know it's going to take us making noise about it, kelsey. It's going to take us making noise about it, kelsey.

Kelsi Rogers:

Yeah, yeah, and we got all the genetic testing. Oh, did you? Yeah, there's nothing genetic related, it's a fluke. What he was born with and I think that that is so important too is that there are tons of these CHD babies. That it is a flu, it's not genetic, it's not anything, it's just.

Anna Jaworski:

Yeah, they said that. To me too, that also doesn't feel good. The ticking time bomb and the flick of nature neither one of those expressions feel very good to me. I guess because I like science and I just want you to tell me okay, there's something wrong with this chromosome, or there's something wrong with this on a cellular level, or I didn't want them to tell me you did this wrong while you were pregnant, but I did want to know if I did something wrong while I was pregnant, so that other women would know don't do this while you're pregnant.

Anna Jaworski:

It's so frustrating that even now, even in 2024, they're still saying oh, it's just a fluke, it's hard to buy into that. I just don't buy into that. I think there is something that's going on. We just don't have sophisticated enough knowledge to know exactly what it is. Don't tell me it's a fluke. I just want to shake people and say, if you would put more money into research, you could draw the hard defects. Then maybe we would get an answer to this instead of it's a fluke, because to me that just feels like a cop-out.

Kelsi Rogers:

Yeah, yeah, I think you're 100% right and I think, in hopefully a shorter amount of time than I think there is going to be this oh, you know what? That small unknown variant that we saw in the genetic testing, that's actually a huge factor for yada, yada, yada. That's the ho, and you're right. You're right. Money, money, we need money for research.

Anna Jaworski:

we need, we need money we do and I'm not the kind of person who wants to go around saying, please give money to, because at this point, who do you give the money to? I don't want them to give them to the american earth association and I, I love you, american Heart Association. I was your speaker for years at the Heart Heroes Conference. I love what it is that you do. I just want you to do more because you're not doing enough. If the American Heart Association would step up and do more, then I would want to be more supportive financially. But they don't do enough for congenital heart disease. The government's not doing enough Right now.

Anna Jaworski:

I give my money to HeartWorks because it's a nonprofit organization working with the Mayo Clinic. They are on a mission to find a cure for congenital heart disease. When I give money for research, I give it to HeartWorks because I believe in them and I believe they're going to find something. They're already having results way beyond what these national organizations that don't pay enough attention to CHD are doing, because they're completely focused on CHD. Right, it's rough, it's rough, it's rough. I feel like I should be a spokesperson for HeartWorks or something. I don't work for them. I don't get a cut of anything. What I get is the satisfaction of knowing that I might be alive long enough to see the future of congenital heart disease radically changed. It has already radically changed in the three decades that my child has been alive. It has already changed a lot, but I want to see it change even more. I would love for the word fixed to actually mean something and for a child's heart effect to be fixed. What I'd love is to see it fixed in utero, so when they're born there's not even an issue. Wouldn't that be amazing? It would be so amazing. And to know that there are parents that are joining forces Right now.

Anna Jaworski:

For those of you who don't know, heartworks is working on a registry of people with congenital heart disease so that, as they are developing treatments and therapies and theories, they can actually reach out to people who have the conditions they're trying to do research for, and this will be very targeted, so you don't have to worry about them sharing the information with the whole world. It's for them to work with their researchers and I fully support what they're doing. I think it is going to take that. It's going to take them having this registry because, luckily, jet and my daughter helped.

Anna Jaworski:

They are one in a million in some ways, but we know that it affects more people than that in some ways. But we know that it affects more people than that and I'm glad that there are heart mamas out there like us who are tiger moms who really want to see things change. But I'm frustrated for us that we have to be traumatized over and over seeing our children go through things that if the community would just put more money into research then maybe we wouldn't have to see our children experience that. I don't want to see other people experience what we've been through Kelsey, I know.

Kelsi Rogers:

I know I'm amazed that Long QT was just discovered in the 80s right, that's not very long ago. We could do so much in such a short period of time. We just have to have the money and the resources to be able to research.

HUG:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members pertaining to the CHD community. Please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Anna Jaworski:

For those of you who don't know, long QT, that's another electrical problem with the heart. And here's what's hard those electrical problems they're invisible. I mean it's also invisible as far as knowing if the left ventricle is there or if there's a valve problem or whatever. But the problem is that if a child with a hypoplastic left heart passes away and they do an autopsy, they see structural problems that help them to identify what the cause of death was. But when your child has an electrical problem, if that electrical problem has not been diagnosed before, they don't know.

Kelsi Rogers:

Right, Because the heart's not beating so they can't see what the problem is. My biggest thing also is they recognize that electrical issues can be a congenital heart defect, but most of the time it's secondary to something structural. You have this structural issue. That's why you're having this arrhythmia and that's not uncommon. And I think, focusing on the structural you're like if we can fix the structural, we'll probably fix the arrhythmia. And then there's people like Jet where it's kind of reversed the arrhythmia created a structural issue kind of reversed.

Anna Jaworski:

The arrhythmia created a structural issue.

Anna Jaworski:

But I had to be that's something I haven't heard of before the structural issue solving an electrical problem?

Anna Jaworski:

No, sadly, because what happens is that when you fix a structural issue, the body creates scar tissue, and everybody's body creates scar tissue in a different way and it's the scar tissue growing over the heart that can cause the electrical problems.

Anna Jaworski:

So even if you have a structural issue and you have surgery to repair it like my child had a coarctation that was fixed, my child had shunts put in the problem was every time they cut on my child's heart there was the opportunity for scar tissue to develop there and that scar tissue has the opportunity to cause me this. So that's why you'll see these kids who have surgery when they're infants and they do great for 10, 12, 15 years and then all of a sudden they start having arrhythmias. Then all of a sudden they start having dangerous arrhythmias. My child had arrhythmias forever, but most of them were not serious and it makes me think that probably all people have some arrhythmias and it's just not a fatal problem. But because our kids are monitored so closely, they can see when the arrhythmias are becoming more dangerous, and that's why my child needed an ablation with the Fontan revision.

Kelsi Rogers:

There's a story I will never, ever forget. I'm in California. I became good friends with a mom in Canada through one of the heart groups. Her daughter, of the same age as Jet, was also diagnosed very early with ventricular tachycardia, wanted to buy like a CHD heart bear for her baby, and whoever was making them told her no because her daughter hadn't had open heart surgery. And her daughter ended up passing away six months ago from ventricular tachycardia.

Kelsi Rogers:

She passed away in her sleep months ago from ventricular tachycardia. She passed away in her sleep, and that's one of my big things that I want to advocate for too is that these electrical issues are very serious Just because there wasn't open heart surgery. These are silent killers. They are very scary. These are very real issues. We're all just fearful for our babies' lives and for us heart moms to just all stick together like that it. It was very sad to me that she was denied that heart there for her baby because she hadn't had open heart surgery.

Anna Jaworski:

That just breaks my heart. She deserved to have the same level of support as any heart mom. Not all babies with structural problems have open heart surgery. By definition, a critical congenital heart defect means the baby has had open heart surgery in the first year of life. But not all people need open heart surgery that first year of life and they still have problems. It's just that they're able to wait and let the child grow up a little bit longer, become a little bit bigger. The bigger your child is usually, the better it is for them to have surgery. The smaller they are, the more difficult it usually is.

Anna Jaworski:

I have friends who have congenitally corrected transposition of the great vessels. You would think, oh, it's congenitally corrected. Well, yeah, kind of. I mean it functions, it functions. Does that mean it's a normal heart? Oh, it's a funky heart, it's a special heart. I have friends who are living to adulthood who have never, ever had surgery. But that doesn't mean they don't have problems. That doesn't mean they don't have a congenital heart defect. They do, but somehow their funky heart is able to allow them to still live.

Anna Jaworski:

Yeah, whoever makes those bears needs to listen to this episode. We love you. Thank you for providing bears for support for the children and for the parents, because it does help us to know that we're doing all we can for our children. Please add on children with electrical problems and even other children who have congenital problems that don't require open heart surgery right away.

Anna Jaworski:

The only thing I can think is that maybe that person is so overwhelmed with orders because we just said this is the number one birth defect Maybe they have to restrict who they can provide the bears to because they don't have the manpower to produce enough bears for all these different conditions. In that case, I would ask you to please let the moms know I can't afford to do that right now, or you might check with somebody else, because they still need that support, even if their child doesn't have an open heart surgery. We heart moms need to stick together and we need to not say oh well, your kid hasn't had open heart surgery, they don't have a big deal. My kids had open heart surgery. No, I've lived long enough to have seen that even the kids that don't have open heart surgery can have very serious conditions and can live a much shorter life than what any of us hope for our children.

Kelsi Rogers:

Yeah, and on top of it, the sweet baby girl's name was Teddy Give her the teddy bear.

Anna Jaworski:

Yeah, we love you, teddy. We love you, teddy, and we love you, teddy's mom, and I'm so sorry that that happened to you, so we're sending our prayers to you and your family, teddy's mom.

Kelsi Rogers:

It's rough.

Anna Jaworski:

It's rough, it's rough to lose a child. It feels unnatural to lose a child. I have a friend who said to me I don't know why we say it's unnatural, because just 100 years ago the reason why people would have 13 children is because they knew that a certain percentage of them weren't going to live to adulthood. It wasn't uncommon 100 years ago for parents to have to bury their children. And you go to graveyards, you see graveyards that have children buried there and it's probably full of CHD.

Anna Jaworski:

Yeah, that they didn't even know why the babies died. Yeah, I mean 100 years ago.

Kelsi Rogers:

Yeah.

Anna Jaworski:

They had. No, they had no clue. So, yeah, probably a lot of necrotrophic cardiomyopathy. Yeah, long qt syndrome, like you said, but even like hypoplastic left heart syndrome. A hundred years ago there was no help for people with these conditions. So, yeah, we are lucky to live in the day and age we do. We are lucky to have found each other. I'm glad you belong to Heart Moms and I got a chance to see that post, because otherwise you and I might not have time. I will tell you, kelsey, even though you haven't asked me, I'm going to tell you.

Anna Jaworski:

It does get better. There does come a time when you don't feel so afraid of every little thing. Of course, unfortunately, you've lived with a child who has this in the COVID age and so, unfortunately, I think that probably adds to everybody's anxiety. I didn't have that to deal with, but I remember feeling very secluded and very isolated by choice and not by choice, as we discussed earlier.

Anna Jaworski:

You have to do everything in your power to help your child to grow and to be healthy, and the fewer hospitalizations they have, the better right. We don't want them in a hospital with pneumonia or with RSV or something like that. It does get easier, especially once they are school age. Once they're four or five years old and they're doing well, you can actually feel yourself taking a deeper breath. It really does happen. You're not that far off. It will happen. I believe it will happen because you have so many angels in your life. God has a purpose for you and for Jet. I mean, there have been so many chances for the baby to not be here that I think there's a great purpose for Jet and you're saying how smart he is. Who knows, he could be one of the scientists that helps find a cure you just never know.

Kelsi Rogers:

Oh, it gives me chills. Yeah, yeah, yeah, he can already write in his ABCs. He's two and a half. Aw, I mean, he's a genius Like he's smarter than me, I'm telling you that's amazing.

Anna Jaworski:

Now, I think he's a very, very lucky little boy to have you for a mama, because you are doing an amazing job with him. Anybody who can soldier on like you have you've been fantastic.

Kelsi Rogers:

I hope you're doing things to take care of yourself. Kelsey, we're getting there. We're getting there. I'm starting to prioritize some self-care. Now that we're like a year out from open heart surgery, I feel like, okay, it's probably time to take regular showers.

Anna Jaworski:

Oh my gosh, I can totally relate to that. Oh my gosh, without having the baby carrier right there with you. Yeah, yeah, I know, I hear you. That was the only way I'm taking care of girls. Oh my gosh, you maybe had to be right there.

HUG:

I've got sense of my hair. I'm taking girls.

Anna Jaworski:

Oh my gosh, you had to be right there. I've got sense of my hair. I'm looking at you, yeah, yeah, most of the things. Only another hard mom really gets. Oh, my gosh. Yep. Well, thank you for making me laugh, kelsey. You are adorable. Kelsey, before we go, I know that you have a special event coming up. Can you tell my listeners about this event and if they can take part in it?

Kelsi Rogers:

yes, that would be amazing. So on June 30th we are putting on a spy in Chico, california, and it is in support of a 501c3 called Heartfelt. Heartfelt does cardiac screenings to California communities. They provide ECHOs and EKGs. They have screened over 60,000 people and saved over 1,000 lives. They're absolutely incredible. We really need funding to keep this going. They screen people from ages five years and older, so they do a lot of adolescent athletes. They'll go into schools. Really incredible work. So we would love to have you, yeah.

Anna Jaworski:

And what city?

Kelsi Rogers:

is this in Chico, chico, california.

Anna Jaworski:

Is there a website where they can go to get more information?

Kelsi Rogers:

Yeah, we have a Facebook event. It is called the Tiny Tickers Trot. It is a 5K run slash walk or you can look it up on run. Sign up and look up tiny tickers trot. If you're not able to make it to the event and you want to consider donating, there's a donation button on the website as well great, and I'll make sure that I have those links in the show notes.

Anna Jaworski:

So, friends, if you're on your exercise bike or if you're driving to work, don't worry about writing it down, it'll be in the show notes. So, friends, if you're on your exercise bike or if you're driving to work, don't worry about writing it down, it'll be in the show notes. And that's the description of the show. Thank you so much for coming on the program today, kelsey. Yeah, thank you so much, it was my pleasure. Thank you so much for tuning into our program today.

Anna Jaworski:

Friends, I hope you enjoyed this second episode with Kelsey Rogers. She and I had such a great time talking. I hope you'll tune in next week where I'll be talking to Holly Stevenson about living with PLE for decades. Her son is amazing and she has a fantastic story to share. Until then, if you enjoyed listening to this episode, please consider becoming a patron. There are so many different ways you can be supportive of the podcast. Giving financially always helps, because there's a lot of bills around having the podcast. But in addition to that, we're always looking for volunteers, we're always looking for guests and we love to engage with our community. You all are the reason why this podcast is so important, so I hope you have a great week. Check us out at wwwpartsunitetheglobecom. There are lots of ways that you can become involved and I look forward to getting to know all of you better, because, remember, my friends, you are not alone.

HUG:

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

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