Heart to Heart with Anna

A Family Dealing with Tetralogy of Fallot

January 05, 2021 Deborah Meisten Season 16 Episode 288
Heart to Heart with Anna
A Family Dealing with Tetralogy of Fallot
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Heart to Heart with Anna
A Family Dealing with Tetralogy of Fallot
Jan 05, 2021 Season 16 Episode 288
Deborah Meisten

Do you have a child with tetralogy of Fallot (ToF)? Do you wonder what that child's life might be like? Do you ever worry about how you will help your child move beyond childhood into adulthood where your child will be in charge of his/her own healthcare?

Deborah Meisten and her husband are the parents of a baby who was born with tetralogy of Fallot (TOF). Deborah and her husband are in healthcare. She is a pediatric nurse practitioner and her husband is a pediatrician. Their son is now 16 years old. The family is preparing for the future to empower their son to transition to age-appropriate health care responsibilities.

In this episode of "Heart to Heart with Anna," Deborah shares with Anna what her heart journey has been like, some advice she's gained along the way, and ways she, her husband, and her son's cardiologist have worked to help him transition from cardiac care as a child to transferring that care onto him.

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Show Notes Transcript

Do you have a child with tetralogy of Fallot (ToF)? Do you wonder what that child's life might be like? Do you ever worry about how you will help your child move beyond childhood into adulthood where your child will be in charge of his/her own healthcare?

Deborah Meisten and her husband are the parents of a baby who was born with tetralogy of Fallot (TOF). Deborah and her husband are in healthcare. She is a pediatric nurse practitioner and her husband is a pediatrician. Their son is now 16 years old. The family is preparing for the future to empower their son to transition to age-appropriate health care responsibilities.

In this episode of "Heart to Heart with Anna," Deborah shares with Anna what her heart journey has been like, some advice she's gained along the way, and ways she, her husband, and her son's cardiologist have worked to help him transition from cardiac care as a child to transferring that care onto him.

Links to 'Heart to Heart with Anna' Social Media and Podcast Pages:

Apple Podcasts

Facebook

YouTube

Instagram 

Website

Support the show (https://www.patreon.com/HearttoHeart)

Deborah Meisten:

You go from being super excited. You're having a baby; the baby's here. And now you've got this diagnosis and this complete worry -- is your child going to have a wonderful life?

Anna Jaworski:

Welcome to "Heart to Heart with Anna." I am Anna Jaworski and your host. For those of you who don't know me, I'm a heart mom. My son was born with a single ventricle heart. And he is the reason I host this podcast. I'm so happy you're here with us today. And I'm very excited to feature another heart mom. Today's show is entitled 'A Family Dealing with Tetralogy of Fellot.' Deborah Meisten and her husband are the parents of a baby who was born with tetralogy of Fallot or ToF. Deborah and her husband are in healthcare. She was trained as a pediatric nurse practitioner, and her husband is a pediatrician. Their son is now 16 years old, the family's preparing for the future to empower their son to transition to age-appropriate healthcare responsibilities. And we have Deborah Meisten here with us today. Welcome to "Heart to Heart with Anna," Deborah.

Deborah Meisten:

Thank you so much for having me. I'm really happy to be here.

Anna Jaworski:

This is great. I love having another heart mom to talk to. And we can go way back because your baby is 16. Let's start by talking about what your pregnancy was like.

Deborah Meisten:

I had a completely normal, healthy pregnancy - no issues at all. I had some nausea and morning sickness early on. But otherwise, it was totally healthy. I had elected not to do the prenatal screenings because some of them have kind of a high false-positive rate. So instead of that, when I was 18 weeks pregnant, I requested a level-two ultrasound. And that's when they picked up the tetralogy of Fallot.

Anna Jaworski:

Wow. So you found out really early.

Deborah Meisten:

I did. That was actually not a great day, as you can imagine. She was guessing but she saw some of the telltale signs that you look for with touch LG flow. There's a bhoot shaped heart there are certain things that she was looking for. But she did not know that we have a healthcare background. And I mean, if we had not already known... we were broadsided as it was. But

Anna Jaworski:

Sure

Deborah Meisten:

...literally she just walked out with the room. I actually started having contractions from the stress of that situation. So my husband - thankfully, this is where being in healthcare was a huge advantage - he picked up the phone, called a friend, and we went over to a big hospital across town the same day, had the cardiologist look at the baby and determine In fact, yeah, he does have tetrology of Fallot. We did not have to wait to...

Anna Jaworski:

Wow,

Deborah Meisten:

we learned right away.

Anna Jaworski:

Wow. Oh my gosh, but what a huge relief for you that - I mean, terrifying. Yes. But relief too that you had people you could call, they would see you right away. You weren't put off and okay, so we've got a diagnosis. It's not what you want. But now you can plan your course of action.

Deborah Meisten:

Yes, I think for me anyway, of the not knowing was a huge stress.

Anna Jaworski:

Oh, yeah!

Deborah Meisten:

We even did a amnio.

Anna Jaworski:

Oh, wow.

Deborah Meisten:

So I knew within 24 hours, that he did not have Down syndrome, he did not have DiGeorge, or some of the other things that they screened for that can occur with tetralogy of Fallot sometimes, but not all the time. And the reason I had elected not to do the triple-screen was because it wasn't going to change the course of the pregnancy in my mind, but just having that information really helped empower me to...

Anna Jaworski:

Sure

Deborah Meisten:

...prepare for what was coming. And if there is something that we could do before he was born to help him, we definitely wanted to know that and...

Anna Jaworski:

yeah

Deborah Meisten:

...just being able to get that information was really helpful.

Anna Jaworski:

Absolutely. You're so lucky that you didn't have to wait. Because I think it's that waiting that is so stressful.

Deborah Meisten:

Yes.

Anna Jaworski:

And to be told, "Oh, well, you have to wait for two months" Oh my gosh! That's interminable!

Deborah Meisten:

Yes, it was. I don't think that I would have been able to carry the pregnancy just from the stress level.

Anna Jaworski:

yeah.

Deborah Meisten:

Yeah. Just the way my body was reacting so quickly.

Anna Jaworski:

Well, yeah! If you started having contractions right away. Oh, my gosh, Deborah! At 18 weeks! That is not a good sign.

Deborah Meisten:

No. And I mean, it settled down before the amnio. And it was just really severe cramping, and I had an OB that was extremely experienced, and I trusted her implicitly otherwise, I don't even know that I would have elected to do that. But luckily, it worked out fine. And sure enough, they were correct.

Anna Jaworski:

Okay, so you're at the bigger hospital, your husband, it sounds like called a friend. And they confirmed the diagnosis. What did they tell you after that? Were you familiar with the diagnosis of Tetralogy of Fallot?

Deborah Meisten:

We were. We were. We both were very familiar with it. Well, I say we're familiar with it. I knew what it was. I knew what it was. I knew historically, how people with tetralogy of Fallot before the invention of the bypass machine didn't live very long, their life expectancy was not very long. And that was just the most miraculous invention in my mind.

Anna Jaworski:

Yeah, right.

Deborah Meisten:

But I really didn't know - especially at that point - how long people with tetralogy of Fallot could live, their quality of life. And I think that first generation that had benefited from that invention of the bypass machine, were just then reaching adulthood. And I'll tell you, this was the craziest thing. A few months after that, I was still pregnant. I was walking around my neighborhood. I hardly told anyone about the diagnosis. And I just happened to run into a neighbor that I did not know well, but she was watering her lawn, she stopped. We chatted for a minute, she asked how the pregnancy was going. And for whatever reason, I said, "Well, we know that he has a heart defect, and he's going to need surgery, probably between the ages of four and six months of age, but we'll just have to see" and she said, "Oh, do you mind if I ask what he has?" And I thought, 'There's no way she's gonna know what tetralogy of Fallot is.' But I told her and she said, "Oh, I have that." And I just looked at her. Yeah, the hairs just stood on end.

Anna Jaworski:

That just happened to me! I just got goosebumps, Oh, my gosh,

Deborah Meisten:

It was... I don't even have words really, even now, this many years later, but it was a gift because I just looked at her dumbfounded. And she said, "Yeah," she said, "My parents were told I wouldn't live past 12." She said she had her first surgery when she was three, another at 12, another at 16 and at 19 they invented the bypass machine. And she said, "Look, I'm 56 years old. I'm married. I have two kids, and three grandchildren, and they're all healthy, and I have a wonderful life."

HUG Info:

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

Rejoiner:

You are listening to "Heart to Heart with Anna." If you have a question or comment that you would like to address on our show, please send an email to Anna Jaworski at [email protected] That's [email protected] Now, back to "Heart to Heart with Anna."

Anna Jaworski:

Okay, I'm wiping the tears out of my eyes. Oh my gosh, Deborah. (laughter) What a story! This is amazing! Well, let's move on because I know that your son is much older than a baby now. But let's talk about the support that you and your husband received. It looks like you already received the support in a very unexpected place with your neighbor, which I think is just a beautiful story. But I also know that you have friends in high places. As far as having friends that are in the medical field. What kind of support Did you receive? Those - oh! so many months carrying a baby that you knew would be born with this problem and then immediately after...

Deborah Meisten:

Well, we have a lot of great support; our family was very supportive. They were broadsided, as well. None of them are medical people. So they really didn't know the best way to give us support other than just being good listeners and asking what we needed - that kind of thing. My sister, in particular, was just a phenomenal support the whole first year of his life, but our friends are wonderful. And I have to say, having the medical backgrounds that we do was very much a benefit in some ways. And in other ways that was a double-edged sword, you know, when somebody says, "Oh, your child's on bypass," or "We had to put them back on bypass," we know what that means. We know what the risk of that entails, especially 16 years ago.

Anna Jaworski:

Sure,

Deborah Meisten:

And it's hard to not let your mind go down every rabbit hole. Sure. Yeah. In some ways, it's a real negative. But another way, it's a big positive and being able to talk to other physicians who can tell you things off the record, their opinion of surgeons, and their opinion of facilities, and just pulling up some medical information from the medical school library that is really easily accessible to us, really, anyone can get it, but we kind of already knew how to navigate that system.

Anna Jaworski:

And you could understand it because I could get some of those medical articles by going to the graduate library where I was a student, but it wasn't easily understandable to me, because my background was as a teacher of the deaf. (laughter) So you could understand all that terminology, which again, I'm sure was a double-edged sword, on the one hand, it was probably scary. On the other hand, at least you knew with great accuracy, what it was that you were facing.

Deborah Meisten:

Absolutely. And even just when we first brought him home, the fact that we both knew what a normal, healthy baby looks like, what a sick baby looks like, just seeing the spectrum of healthy to not-healthy, in a newborn, and how to do normal newborn care. I had cared for newborns in the newborn nursery for years and not having to learn that as new parents, because we were new parents was also a benefit. We already know, questions about breastfeeding, and sleeping, and feeding issues and all kinds of things that were an advantage.

Anna Jaworski:

But it's one thing to be working in the NICU, or to be working in the hospital and working with sick children, and getting to go home and get a break from it, than it is when you're the full-time caregiver. Did it feel a little bit different for you being the mom?

Deborah Meisten:

Really, I think, being able to know how to give a newborn a bath and just all that kind of stuff was a gift. My husband, as a physician, he never gave a newborn a bath. But he knew I knew how to do it. (laughter) ...Kind of those things new parents have to navigate. That part was easy. I think the hard part was just what it would be with anyone with a child who is born with a physical challenge ahead where the future is unknown. And there's all these questions of 'What kind of life are they going to have?' and grieving, the loss of the dream of a healthy child... it's something you have to go through, you do have to feel this feelings, and then embrace the reality that you are living in, and then get the support you need to go past that.

Anna Jaworski:

I love what you said about embracing the reality. Because just because you understood what his condition was, and you understood how to take care of him, what the diagnosis met, what the prognosis meant, doesn't mean that you don't still feel that great grief, of not having a baby who is perfectly healthy. It's okay, it's okay to cry. And it's okay to grieve the loss because this is your only child, right?

Deborah Meisten:

Yes. And I think it's really important that you feel those feelings, there comes a point where you can't let them stay in that space and let that grief overwhelm you so that you can't function, but when you have children that go through the things that they go through, especially that first year of life, and for many heart families, it's years of hospitalizations or surgeries and seeing your child with their chest left open and their heart beating after surgery, it's like these kinds of things are very traumatic.

Anna Jaworski:

Yeah.

Deborah Meisten:

And it's an ongoing process. It's really been a lifelong process of understanding that there will be times where that kind of crisis mode will reoccur. You have this post-traumatic thing that just kicks in and you don't always know when it's going to happen.

Anna Jaworski:

That's for sure.

Deborah Meisten:

Then there's other times where you're kind of at a calmer state, and just trying to navigate normal life. But you still have that in the back of your mind. And it does influence how you parent, how you handle other stresses in your life. And it can really be a challenge.

Anna Jaworski:

Yeah, it can. But you've said twice already how you received certain gifts. And that speaks to me volumes of your personality, Deborah. You're the person who finds that silver lining, and that has probably enabled you to live a much happier life than if you couldn't see the rainbow for the rain.

Deborah Meisten:

That's very kind of you to say that, honestly, I think part of that is just the way I was raised. But I think a lot of it is just trying to learn about how to face the challenge. And the best way that is healthy for me as a mom, and also is the healthiest way to navigate this for my son and to teach him how to navigate challenges that he's going to have in his life, whether they're related to his health or something else,

Anna Jaworski:

Right

Deborah Meisten:

Look at those things as opportunities to grow rather than things that are debilitating.

Anna Jaworski:

Absolutely, absolutely. I couldn't agree with you more. Because for most of us, it's not just health issues that we're going to have to face in our lives, that can be a challenge. But there are going to be challenges in all different aspects of our lives, especially if we lead a life that's rich. And that's what we hope for our children is that they can lead a life rich, full of good people, good literature, maybe travel, hobbies, sports, music, I mean, if you fill your child's life with rich opportunities like that, you're also going to be filling them with challenges. And learning how to face those challenges is a life lesson that hopefully they'll keep with them and internalize like, it looks like you have from what your parents have taught you. Okay, so there's a huge change that goes from being a professional working couple, to all of a sudden the parents of a sick child. Did you feel that your medical knowledge prepared you to be the parent of a baby with special medical needs?

Deborah Meisten:

Not necessarily. I would say one thing stands out to me that was probably a benefit. And... and this was when we've worked with families who had children with chronic illnesses or a different diagnosis that might go on for years before being resolved, and sometimes never being resolved, in the sense that they don't have to worry about it anymore. We definitely could see in our own practices, cases where the trauma of the parent having the diagnosis negatively affects the child, depending on how they respond to it themselves. And it was interesting, because when we got discharged from the hospital, our son did have surgery and his repair was at 17-weeks-of age. And he had a very complicated post-op period. We were there six weeks. They were expecting us to be home in three-to-five days.

Anna Jaworski:

Wow.

Deborah Meisten:

Yeah, it was a pretty dramatic step. And so when we left though, as we were getting ready to leave the hospital, his cardiologist (we really liked) came and sat down with us and said, "Look, guys, I've been doing this 27 years. I see 50 kids a week in the cardiac clinic, and most of them are medically fine. They're stable, they're doing great. There's a huge percentage of them that have psychological issues, pretty significant ones." And he said, "Almost always, it's not because there's anything wrong with the child. It's because their parents cannot get past the beginning, the trauma of the beginning." And we had seen that ourselves. So that really resonated with us. And we took it to heart more than maybe we would have otherwise. He said it's very common. And it makes sense that parents would either do one of two things typically say 'yes' to everything the child wants forever. Yes, and indulge them, overindulge them or do the other thing, keep them in a bubble and don't let them live their life. And they're just worried and afraid for them all the time. And that absolutely can translate to the child. And it's certainly never intentional in my mind. No one would ever intentionally do that to hurt their child's development or anything but it does - it does have an impact. And so it made us from the beginning, be super mindful and intentional in our parenting and make sure we had each other to kind of check each other when one of us was maybe freaking out a little too much for the situation or the other one was 'Ooh! You know, maybe, maybe we shouldn't give him this right now. He doesn't necessarily need that at seven' or whatever, we would check each other more. And just be mindful of that. And I think that was the gift that was helpful to us.

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. Before the break, we were talking to Deborah about her life as a mom, and especially as a heart mom, and the parent of a Heart Warrior with tetralogy of Fallot, which is a critical congenital heart defect requiring surgery within the first year of life. In this segment, I want to ask Deborah, some advice that she might have for other families. So let's start by finding out what advice you have for other family members who might be facing a journey of heart surgeries and uncertainty, which is what we were just talking about before we went to break.

Deborah Meisten:

Gosh, I would say it really depends where in the journey, they are - my advice that I would give. I'd say in the beginning, give yourself a lot of grace, because it's overwhelming. And you need to be kind to yourself and patient and ask a lot of questions. You'll repeat the same questions, because it's not all gonna stick.

Anna Jaworski:

Oh, my gosh, I'm so glad you said that. Yeah, it doesn't always stick the first time. Do you think that's part of the PTSD or part of the stress and anxiety that we're under?

Deborah Meisten:

I think in the beginning, it's just being overwhelmed. Nobody expects to have a child with physical challenges right out of the gate. So you're broadsided. You go from being super excited. You're having a baby; the baby's here. And now you've got this diagnosis and this complete worry. Is your child going to have a wonderful life? Are they going to be the kid that's going to be playing soccer with the oxygen tank driving behind them on the soccer field? You don't know what to picture for them. You don't know what it's going to be.

Anna Jaworski:

Or if they're even going to make it to the age where they could play soccer.

Deborah Meisten:

Absolutely, are they gonna even leave the hospital with you? You don't really know. And are you going to be equipped to give them what they need, when they need it? And so I would just say a lot of grace, ask for help, get support, get your information, talk to everyone that you can about getting the best care that you can for your child, start taking on that advocacy role early on, because you're gonna need it.

Anna Jaworski:

Absolutely. So I'm curious, you told me about the neighbor that you met when you were walking that one time. Did you ever go back and introduce your son to her? Did you ever talk to her again?

Deborah Meisten:

Yes, I definitely remember walking through the neighborhood and stopping and talking to her. But we did not stay connected. We did not live in that state much longer. We moved when our son was two-and-a-half, and to another state where we've been ever since. But I think about her all the time when I tell the story, it still gets me very emotional thinking about that. And what a gift that was. That was such an unusual thing. And I just don't think it was an accident, for sure.

Anna Jaworski:

I know. I don't know how you feel spiritually. But I kind of feel like she was an angel put on earth here to be there just for you at that one moment in time, because you really needed her.

Deborah Meisten:

Yes, for sure. And that actually brings me back round to what question was too - which other things I would give advice to people in this situation. For us, our faith was key, and still is. And it is for our son as well. It's really helped him and just having a network of people that you can turn to. Now there's online support groups that didn't exist when he was an infant. So it's a huge benefit to people. And I would encourage them to take advantage of that.

Anna Jaworski:

Yeah, I think all of that advice is spot-on. And it would have been spot-on when your son was a baby. And even though it is 16 years later, it's still spot-on advice, because that is still something (even though we do have the internet, even though people around the world can connect easier than they could 16 years ago), you still want to reach out and embrace that. You were just in the right position since you and your husband had that medical training. It sounds like you had a lot of support from your family and friends, as well. That made a huge difference for you.

Deborah Meisten:

We have. We've been really lucky since we moved to the new location. He's had the same cardiologist now for 14-and-a-half years. We have a great relationship with him and he's been a wonderful partner in helping our child walk this journey. He always talks to him when we go into the office for a checkup or an appointment. He doesn't even look at my husband and I until he has talked to our son. Our son, just five weeks ago, had his second open-heart surgery. And he had no procedures in between other than CT scans, stress tests, MRIs every few years, that kind of thing. But no catheterizations, no more invasive surgeries. And he's been doing great. We knew since he had his first surgery, it was not a valve-sparing surgery, (they removed his pulmonary artery valve; it wasn't able to be repaired), and it was more obstructive. So we knew at some point, he would need a valve placed. And we were hoping by the time he needed one, the technology would be there to put one in through the cath lab...

Anna Jaworski:

Sure

Deborah Meisten:

...and not have big invasive surgery. And that technology actually is here now. He was even in a clinical trial to see if he was a good fit for that. And he is not.

Anna Jaworski:

Awww

Deborah Meisten:

Yeah, and you know what, we had some questions about it too. So I honestly think it worked out the way it was supposed to work out. So we're thankful that we have access where we live to a world class surgeon, because when we first moved to where we are, that surgeon was not here, and I don't know that we would have stayed in the state for the surgery. But that has changed. And this person had relocated to our area a few years ago. So we just felt blessed that the stars kind of aligned. He did another open-heart surgery, which of course you never want for your child. But if they need it, you want him to do well.

Anna Jaworski:

Right

Deborah Meisten:

He did great. So I mean, he was home less than 65 hours later.

Anna Jaworski:

Wow.

Deborah Meisten:

And he's out right now hiking with his dad...

Anna Jaworski:

Oh, my gosh!

Deborah Meisten:

...and he's doing great. He's amazing

Anna Jaworski:

Wow. Okay, so it sounds like the family has really worked to help your son transition with the assistance of the pediatric cardiologist just by gradually having him assume more of a pivotal role when you have your cardiology visits. And even in this surgery, it sounds like your son was front and center and knew what was happening to him and was part of the care team. Would that be accurate?

Deborah Meisten:

100%! Yes. Even when he was in a clinical trial - that was at a different facility in another state. So we were doing conference calls with my husband, my son and I and the principal investigator for the trial for literally several hour-long calls, where we would all ask questions, our son would ask plenty of questions. Sometimes he'd slide a note across the table, saying 'What does that mean?' Or 'What did you guys say?' 'What's the definition of that word?' and he would also ask his own questions. But his cardiologist would always say to him, "Hey, at age 16, this is your decision. You are the patient. As much as I am fond of your parents, (chuckle) at age 16, no one is going to strap you down and perform open-heart surgery on you against your will. This is your decision. This is your call. Your parents and I are here to advise you, but it is your decision." So we followed his lead. And we've tried to do that honestly, since he was young. But with this, we just really said, "Do you want to pursue another clinical trial? There is another device or we could go to open heart surgery." And we had already met the surgeon and he had spent an hour-and-a-half. And our son had asked multiple questions of the surgeon. I don't even ask my questions until I've listened to what everyone else is saying. Because sometimes he'll ask the question that I was going to ask.

Anna Jaworski:

And it's good that you waited a beat or two and gave him a chance to formulate that question himself and ask it before you jumped right in. I'm guilty of doing the opposite. I'm guilty. If a question comes to my mind, I have to ask it before I forget it. (laughter)

Deborah Meisten:

That goes back to write things down. (chuckle) Write things down because I will forget things, too. I mean, I have to write things down. And that way, I'm not panicked that my question will get answered at the end if it wasn't asked. The other thing I would say too, is because we have that healthcare background, we're able to explain things to our son and kind of navigate the system and navigate some of the information in the terms and things like that. And I would say if you don't have someone in your family that can do that for you, seek one out. And even if you're in the hospital, ask for a patient advocate if you feel like you're not understanding the information that you're being given.

Anna Jaworski:

That's a great idea. Not all hospitals have that though, do they?

Deborah Meisten:

I don't think so. I think a lot of them in the United States do but we're lucky here in a lot of ways.

Anna Jaworski:

Yeah. It never hurts to ask. You can always ask and if you hospital doesn't have one, go out to Facebook, friends. Join a Facebook group there are so many groups for families of children with heart defects. There are specific ones for specific defects, especially ones that are more common like tetralogy of Fallot, hypoplastic, left or hypoplastic right heart syndrome, TGA, or transposition of the great vessels. You'll see support groups specifically for those. But then there are more general groups that just say, 'heart moms' or 'heart mums,' (chuckle) which lets you have the difference between Australia and the United Kingdom versus America, which I think is kind of cute. I belong to both because I love to see what the Australians and UK moms and moms all around the world have to say. And you can post in there, 'I'm having trouble. I'm not medical, I don't understand this. I'm scared.' And you would be surprised who will come forward and say, "I can do this with you. If you do a Zoom call, I can be your patient advocate." I mean, that's one of the things that I love about our heart community is that people really are there for each other, don't you think Deborah?

Deborah Meisten:

Yes, definitely. I've noticed even in the last couple months, even just in the last five weeks since our son's last surgery, I feel like I've been able to be on the giving end not just the receiving end of that care more. I probably just have more bandwidth now that the surgery is behind us to be able to do that kind of thing. But it is not uncommon for me to see a question like that and then to private message the person and connect with them either online or a FaceTime call or something like that, and give them more detail, then you can just quickly give them a post but at least just offer a perspective on what they're asking if I feel like it's a good fit for my experience.

Anna Jaworski:

I just love that! You have been such a delightful guest. I cannot believe our time is up already. But I feel like you did a great job of giving our Listeners some ideas for ways they can help their teens to transition and also ways for the parents just to handle life with a child with a chronic illness. Thank you for being on the show, Deborah,

Deborah Meisten:

thank you so much for the opportunity. I really appreciate it.

Anna Jaworski:

Well, it has been a lot of fun, and I've really appreciated how positive and uplifting your story has been.

Deborah Meisten:

Oh, thank you. Thank you.

Anna Jaworski:

Well, that's it for this week's episode. I hope you enjoyed it as much as I did, my friends. If you enjoyed this program, please take a moment and leave a review on whatever platform you use to listen to our show because that will help other families to know what they can expect with "Heart to Heart with Anna." And remember my friends, you are not alone.

Conclusion:

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. "Heart to Heart with Anna" with your host Anna Jaworski can be heard every Tuesday at 12 noon, Eastern Time.