PEDIATRIC CARDIOLOGY
- Atypical Truth
- Feb 15, 2022
- 39 min read
Updated: Jan 4, 2023
DR. CHETANA REDDY
Hosted by Erica Jolene and Kristyn Newbern with special guest Dr. Chetana Reddy
Transcription HERE
Dr. Reddy takes us through a day in her heels as she travels throughout Cardinal Glennon Children's Hospital helping her Pediatric Cardiology patients. In this episode, we get to learn more about the many layers of communication that take place before the doctor ever appears in your room. We also get to learn more about the importance of hearing a patient's story as opposed to reading it in a medical chart - two very different approaches to learning about the medical history, both equal in importance. Dr. Reddy shares with us the unexpected joys she has found in her role in helping older pediatric patients and her hopes for the future of medicine.
[Image Description: Coral-peach background with a white font that reads, “Pediatric Cardiology, Dr. Chetana Reddy, Cardinal Glennon Children's Hospital” Framed in a circle at the center of the image is a photo of Luke facing Dr. Reddy as he assists her as she is knelt down in from of him in the examination room listening to his heart with a stethoscope.]
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Episode Transcription
Erica 00:15
Welcome to Season Two of Atypical Truth. I'm your host, Erica Jolene. In just about every episode, I start by quoting Walter Fisher, when I state that humans are storytelling beings. That is right, we all have a story to tell. And it is through those stories where the power of connection, validation and community are built. Which is why I created this podcast, to amplify the stories of people in my community, the community of rare diseases, disabilities, and complex medical conditions. I know that I've personally benefited through learning from the stories of others in my community and I hope that you have as well.
Erica 00:59
In every episode, I also make a point to state that not only will you hear from my peers in this community, but you will also hear this stories from family, friends, and professionals who advocate with us. And you may find yourself asking, "Why do I include conversations and stories from individuals who were not living with the topic at hand, but instead connected to it through personal or professional experiences?" And this is a great question, one that I will likely readdress throughout every season. I share these stories, because I feel that it is important to hear their perspective as well. As someone who has always lived with varying forms of disabilities, I'm fascinated by the stories of those who choose to show up in our lives to support us and advocate with us. Not just people who show up in this capacity because they're personally impacted by disability through a kinship to someone with disabilities. Those stories are intriguing as well. But I especially enjoy talking with people who, from an early age and having no personal experience with disability, they saw the value in our community, and they decided to dedicate their lives working to help us - be that through providing personal care, or advocacy and policy work. Those are some amazing stories as well. And you're about to hear one of those today.
Erica 02:39
My guest host this season is Kristyn Newbern, who is a fellow mother and caregiver of her son, Luke, who was born with the primary diagnosis of congenital heart defects and it was later discovered that he had a genetic disorder called Noonan syndrome. In today's episode, Kristyn is joined by Dr. Chetana Reddy, who is a pediatric cardiologist at Cardinal Glennon Children's Hospital and St. Louis Fetal Care Institute, where she specializes in congenital and acquired heart disease in children. In addition to her presence at Cardinal Glennon, Dr. Reddy is also the Assistant Professor in the Department of Pediatrics and Division of Cardiology at St. Louis University School of Medicine. Oftentimes, these medical professionals, you know, the ones like Dr. Reddy with really intimidating titles and huge responsibilities, they enter our lives during a pretty difficult and scary time. We come to them desperate, seeking their medical expertise, their advice, and their guidance. And we place an immense amount of trust in these professionals. We place the lives of ourselves, or our loved ones in their hands, without even knowing their first names. But beyond all the titles, and underneath that bright white coat, there exists a person with their own intriguing life story. And as we take the time to learn more about the people who make up our care team, we learn just how relatable they are outside their intense roles as clinicians. So before Dr. Reddy shares about her experience as a pediatric cardiologist, we're going to take some time to learn about Chetana the person before all the titles.
Kristyn 04:50
What is the world's best breakfast?
Dr. Reddy 04:54
So for me breakfast is the most important part of the day, but it's also my favorite meal and I really like, both sweet and savory. So I would probably just say an omelet but I would want a side of pancakes.
Kristyn 05:07
Oh, okay, but what is in your omelet?
Dr. Reddy 05:10
Um, I really like a Denver omlet.
Kristyn 05:12
Ooh, yes, good choice.
Dr. Reddy 05:14
I actually had a restaurant idea if, you know, of course if I didn't do pediatric cardiology. But my sister and I wanted to do a breakfast tapas restaurant, because sometimes you go to the restaurant and you want just a little of everything. So instead of everything ala carte, you just go to a tapas restaurant and you get a little of all your assortment.
Kristyn 05:30
Oh, my gosh, Dr. Reddy. Well, first of all, I'm so glad that didn't work out for you. I'm so glad that you fell back on pediatric cardiology.
Dr. Reddy 05:39
Right.
Kristyn 05:40
But no, I think that's a fantastic idea. And if you ever, if you or your sister ever go into that, let me know, I will be your first customer.
Dr. Reddy 05:49
I'm going to trademark it right now. So no one steals it.
Kristyn 05:51
Yes, exactly. No one can steal it. And if they do they have to, you know, be in partnership with Dr. Reddy. Love it. If you could pick a decade of fashion for history to repeat, which decade would you choose?
Dr. Reddy 06:06
Um, let's see. I think for me the decade that I am fascinated by and I just I love in terms of fashion is the 60's. I just love the clean lines, the really bold colors, a lot of geometric stuff. If anything could come back again, that would be it.
Kristyn 06:23
I think that's awesome. All right. So do you have any irrational phobias?
Dr. Reddy 06:29
Snakes hate snakes.
Kristyn 06:31
Okay, but that's rational, right? They're scary. Some can bite.
Dr. Reddy 06:37
Clowns? Does clowns count?
Kristyn 06:39
Yes, that would count, right? What's a domestic chore that you actually don't mind doing? Or maybe even enjoy?
Dr. Reddy 06:48
I'd have to say vacuuming.
Kristyn 06:50
Vacuuming? Okay.
Dr. Reddy 06:51
Yeah, I really like to vacuum. I find it, something about repetitiveness of it. It's very, kind of soothing and kind of Zen.
Kristyn 06:58
I love that. So, do you do you have like a specific pattern, you know, that you follow for each room?
Dr. Reddy 07:06
I am rather particular, well, not that I'm particular but I like to go in in an order. So it's like mowing my lawn to I do like the maze. Instead of the back and forth. I like start out on the edges. And I like to like create my own little maze all the way to the middle.
Kristyn 07:19
Oh my gosh, I love it. Not that I would guess that you were particular. But I could see you having having a routine with it and everything being organized. Okay, and what is a memory or moment in your life that has brought you great joy?
Dr. Reddy 07:37
A lot of my joyful moments are probably big family get togethers. I have a big family, mostly just a lot of extended cousins. We all kind of get together at least a couple times a year, well, pre-COVID, I should say. You know, it's just my sister and I in terms of siblings. But this way it provides me to have a lot of older, kind of pseudo siblings in a way. And so we have a lot of fun together and we still tease each other like we're ten and have high jinks and stuff. And so
Kristyn 08:02
Is everyone here in town? Do people come into town? Does everyone go to vacation together?
Dr. Reddy 08:08
Yeah, normally we pick a destination. We do a lot of beach vacations at times.
Kristyn 08:13
I love that. That sounds like a wonderful, wonderful vacation and family experience.
Erica 08:21
So how does this down to earth, breakfast loving, 60's vacuuming fashion Queen decide to put the breakfast tapas restaurant idea on hold and instead pursue pediatric cardiology? It seems to me that it was just kind of always meant to be. Dr. Reddy grew up in a small farming town in Indiana. Her father was a physician in this small town. So medicine, it's always been a part of her life.
Kristyn 08:56
Can you describe maybe a little bit more about yourself personally? And then what brought you to your current professional role?
Dr. Reddy 09:04
Yeah, I did pediatrics for three years and then kind of decided on cardiology a little bit on the later side. And so I did a transitional year where I did transport and worked a lot of the nurseries. So that was kind of fun and different.
Kristyn 09:17
Wow, I didn't realize that. And that was something that I have wondered too is, you know, kind of which, the chicken and egg question, which came first? So were pediatrics that was the, you know, the inspiration from the start, or was it cardiology?
Dr. Reddy 09:34
Yeah, medicine. You know, my father was a physician kind of in a small town. And so that's sort of how I got introduced to medicine and pediatrics for me was an easy choice. I grew up in a community with a lot of kids, you know, definitely was always drawn to them. And I always tell the medical students now if they're struggling with trying to figure out what career path I always say, "Look, if you're on your OB rotation and the baby's born, like where do you go? Like do you follow the baby over to get resuscitated, or just get warmed up, or are you like, with the mom, you know? And all the stuff that happens afterwards?" And so I feel like that's a really telling sign of like, where is your interest and your heart kind of going to sort of help them choose a path. Because I feel like that's a pretty big decision making kind of fork in the road. You know, I have a cousin who does adult medicine, and I'm like, I don't know how you do that. And she's like, I don't know how you do what you do. And so, you know, everybody's suited to their, to their area.
Kristyn 10:26
I remember when Luke was born. And of course, we having at least the heart diagnosis before he was born, I felt like there were 45 people in the room, right?
Dr. Reddy 10:36
It's a real spectator sport.
Kristyn 10:38
Yes, exactly. So we had all of this and, and then it actually became a C section, right. And so I just feel like, the more layers you add, the more people come up here. And then he was born and whisked away to the NICU, of course. And then I remember, you know, I was kind of out of it myself. But I remember kind of looking around and being like, "Am I alone? Is, is anyone else here?" So, so yes, I was very appreciative of my OB staying by my side. And yes, so I like that idea. That concept of where are you naturally drawn. Needless to say, I mean, you are a fantastic fit for pediatrics, you know, not that I'm biased. But you do have a very natural and caring approach to your patients. And I'm so glad that you chose pediatrics. But what inspired you specifically to pursue cardiology?
Dr. Reddy 11:38
You know, I didn't go into pediatrics really knowing much about it, like you said. You know, I funny enough, I wanted to do a rotation away, because I have friends in Chicago. And the only availability was pediatric cardiology, as a rotation. I think this was actually in medical school, for residency. And so that was the only opening and I was like, "Okay, I get to go to Chicago, hang out with my friends." And it was a really great experience at Children's Memorial. And the attending that I had, I think was just really enthusiastic about the specialty and just really great with his patients and just loved what he did every day. And it was really inspiring and kind of infectious. And I was like, "Oh, this guy's pretty awesome. And, you know, he gets to wake up every day, and he really enjoys what he does." And, and for me, it's plumbing in a way. And so it's fun to kind of think through how the blood is moving through the heart, what we need to do to fix it, and it's a little bit more black and white than a lot of other peds specialties, which helps, I think, with my personality as well. And then, you know, around that time, or I think a little bit after, my nephew, actually, was born with a heart condition as well. And I didn't know much about it initially, and then kind of got to know and more about it and kind of learned about it. And so that sort of all came together.
Dr. Reddy 11:55
So many sources of inspiration...
Dr. Reddy 12:04
Yeah, it's crazy, you never know how your path or you know where your path is gonna go.
Dr. Reddy 12:28
You sure don't. And I love that it was a teacher that inspired you first. I feel like the teachers and the mentors in our life, they have such an impact and really change our trajectories. So that's really neat. And, and then you said your nephew, he was born after you decided on pediatric cardiology?
Dr. Reddy 13:22
I think it was around the same time or before but you know, they didn't, they didn't know anything about his heart condition. He had had 20 week ultrasound, kind of your basic ultrasound and everything going fine. And then he was born and he was blue. And and at that point, I think I was not quite in residency yet. And so I didn't know much about it to like, you know, be able to offer help for them. And then he had surgery around four to six months. And so...
Kristyn 13:46
Wow...
Dr. Reddy 13:47
Yeah, that was kind of interesting. When he had another surgery done, I think he was around 12 or 13. And so that was you know, definitely I was well into my career at that point. So it was kind of funny to fly down for his surgery to just kind of support my cousin sister and yeah. And I'm like, you know, going into the room after his surgery and that night and I can tell she's, she's a physician as well. But you know, when you're a mom, it doesn't matter, right? It all goes out the window. So she's staring at her kid and she's just this look on her face. I'm like okay, and then I like just had to be like, looking at the monitor and kind of I just basically went through everything with her like I would any other parent and was like, "everything's good." You know, he's doing well and...
Kristyn 14:25
Oh, that's great. Honestly, I think you were absolutely the best person to be there in that moment.
Dr. Reddy 14:33
Yeah, I think you know, uh, you know you we talked about it a lot that level of trust that you have to have with your caregivers, right? Like you're this is your precious little thing and you're handing it over to somebody and and there's not a lot of other people that you even want to be at the bedside. I know at some point I'd asked you, I think where I was like, I will sit with him as you need me to so you can just take a break, but it's so hard for you to want to tear yourself away because there's there's literally no one else that you feel, you know, from a control standpoint that would do the same. And so yes, at least to my, you know, for my sister and, you know, I could sit there at the bedside be like, "Go home and shower." Like, you know, "If anything happens like, this is what I do every day." Like, "I got this. I got this." So, you know, at least in a weird twist of fate kind of worked out.
Erica 15:28
I've always wondered about what life looks like behind the scenes for a doctor. What do they even do when they take that white coat off? And it's, it's hard to comprehend them even having a personal life outside the hospital. Because you know, ours has stopped right? We're there in the hospital, as either the patient or with a loved one who's the patient. And it feels like the whole world has just stopped. Many patients and families are thrown into the medical world with no prior experience or understanding of what this new lifestyle will entail. And as parents, this sudden and oftentimes unexpected experience, it's traumatizing. Our world as we know it, it shifts to a reality where the love we have for our children, it simply isn't enough to sustain them. They need outside professional medical intervention. Not only do we quickly have to research and learn about a new diagnosis, and all the nuances that come with it, we also have to build trust with these new people entering our lives to help care for our children, we have to trust that they're just as invested in our child's well being as we are. And it's not just one person we're learning to trust. It's an entire team, working together, communicating and supporting one another as they work to support a patient. And as Dr. Reddy is about to explain, that is exactly the job she signed up for.
Kristyn 17:11
What would a typical, if such a thing exists, day look like in Dr. Reddy's world? What does it mean to, you know, to be a pediatric cardiologist? Is there any sort of routine?
Dr. Reddy 17:23
So I think my current role is a little more unique, just because I'm in a teaching hospital. And so the way our setup is, is that we because we're constantly having kids, you know, being admitted and having surgery, we have a dedicated inpatient team. So it's one cardiologist, we have a nurse practitioner who's awesome, who works with us as well. And it's kind of the constant. And so we do an inpatient week, about once every two months, where I come in and I round on the patients that are on my service, meaning I'm taking direct care of them, as well as we round on all of the kids who have had surgery, or who are going to surgery. And we cover both the intensive care unit, the neonatal intensive care unit, and then the general floor.
Kristyn 18:09
And so for that week, do you, I mean, do you essentially live at the hospital? Is that, you know, around the clock? I mean...
Dr. Reddy 18:15
Yeah, they're, they're long hours. So I, I like to come in and run with the surgeons, and they tend to round 6:30 in the morning and in the intensive care unit. Just because for the majority of the day, they're often gone into the operating room, and I can be a bossy bit of goods. And I like to have direct conversation with them, you know, rather than having the telephone tree. And so I feel like it's much better to just have that direct kind of patient care conversation at the bedside in the moment and sort of set the plan for the day. But I don't know, I don't you know, our surgeons are amazing. I don't know how they do it, you know? I do it for a week and I'm like exhausted and have to recover for three weeks. And they just wake up every day, 6:30 in the morning, they look like they are fresh as daisies, you know, rounding and so we always laugh about that, but...
Kristyn 18:59
I share that sentiment. And from the patient-family side. I know rounds, six, 6-6:30 in the morning, that was a sacred time. Like no one could text me. No one can...
Dr. Reddy 19:12
Right!
Kristyn 19:12
...mess with me, you know, and then again, at like usually like five to six at night, I was like nothing's gonna stop me from being here and hearing - because it is, it just feels like you get that plan then for the next 12 hours, you at least know what's supposed to happen. So, so, I agree with you that does make a big difference to be there for around. What about the times where you are not on service? How many patients do you generally see in a day?
Dr. Reddy 19:42
Um, I obviously I see normally about like 16 to 20 in a day.
Kristyn 19:47
Sixteen to twenty, different heart kiddos? Wow.
Dr. Reddy 19:52
Yeah, about normally it's more like sixteen, but I will add on like, you know, if there's like a baby that's born and you know, the pediatricians worried then I'll just be like, "Yeah, okay, I just add them on." So the nurses probably, like wanna pull their hair out in the morning, but because my schedule starts out in a certain way. And then I'm like, "Oh, it's fine, like, oh, he needs sports clearance, he's going to football camps. Sure, let him go to football camp. A him on my clinic." So I mean, it's hard because, you know, I'm sure we'll, we've talked about this too, you know, medicine is so different these days than how I would ideally like to practice and how I, you know, I envisioned that my dad practiced. And there's just multiple layers of kind of like, red tape and bureaucracy, I feel like. And so a lot of times, it's really hard, you know, for families, especially the ones who don't want to bother me, you know. But if you know, something's important, like something's pressing, and they call and there's not an appointment, you know, I hate for that to be the reason that the kid wasn't able to go to camp or wasn't able to play a sport. Which, you know, I was a huge about sports and kids and just being asked, and so I just never want that to be the barrier if there's something I can do, so. Honestly, I would see, like, I would see like a million patients a day, it's just the charting which, which is like, it's kind of soul crushing. But...
Kristyn 20:57
Oh, I can't even imagine. Now, I am not surprised by that information, learning that information about you, because I do feel like, as far as pediatric cardiologists go, you're so accessible, you're so approachable. And that's something that you know, especially those of us who maybe were newly heart-kid parents, or maybe we don't have a background in medicine, it can be very daunting, very intimidating to approach someone who is an expert in the field. So I am sure that all of your patients agree with me in saying that that is such such a relief. And it's so I don't know, it's just kind of disarming in a way of like, oh, "I can talk to Dr. Reddy," like...
Dr. Reddy 21:47
I want to take away the stigma of fear, right? Like I've feel like, you know, my specialty in particular, even to general pediatricians out in the community, there's just this level of fear. Because, you know, it does involve, you know, potential death and dying and things that could, you know, unfortunate things that could happen. And so I think everyone is just so fearful of making the wrong mistake or making the wrong decision, or saying yes or no. And so, I think a lot of things end up being referred to us for clearance, or for just expertise or advice, or, because of that reason. And so, you know, I had a mom call the other day, and she was, her son was just sick with a cough or cold, but she had wanted to know if she could just give him like Zarbee's over the counter with his medications. And she was like, apologizing a million times. And I'm like, "What, why would you know that if these medicines can interact or not interact?" Like, "It's not, this is not something they teach you and like Mom 101," and like, you know, so it's very understandable that you just don't want to screw anything up, bottom line.
Kristyn 22:49
I relate to that mom so much, because it's true, too. It's almost like, you're instantly sucked back into what could be the worst possible scenario. Because it has been the worst possible scenario before. And so, you know, what might be a cough, could really devolve quickly into something much more serious and even life threatening. And so that constant battle and internal struggle of I don't want to, you know, you can't, you can't wrap your kid in a bubble and just, you know, keep him away from everything in the world. But at the same time, the consequences are greater for our kids, right, or they could be, right. So I definitely agree with that. I was wondering, it seems like I mean, you were talking about being there on rounds when you're in service and talking to the surgeons and talk about a tough schedule to, you know, catch them for any amount of time. But who all do you work with? Maybe on a daily basis? You know, I'm sure you're working with an extensive medical team. But, you know, I know, I've heard a little bit about your Monday morning meetings, but maybe you could tell me a little bit more about just all the communication that's involved in in your day-to-day?
Dr. Reddy 24:06
Yeah, so it's a lot. I know, sometimes for families that doesn't, it doesn't feel that way. The part that we struggle with is just that it's a teaching hospital to. So you have multiple layers of people coming in, and also just multiple layers of understanding. So you're right. So as the cardiology team, you know, we oftentimes will work with the neonatologist and neonatal nurse practitioners, we're following our kids or babies before they go to surgery. We work really closely with the pediatric intensive care doctors as well. And we work extremely close with our cardiothoracic surgery team. So there's constant communication with them regarding shared patients on the floor, and then you know, new babies that are coming in so that they can sort of plan their schedule and figure out the level of urgency and just kind of keeping them in the loop in case things go south quickly. It is always a little bit of an interesting struggle, I should say, on the floors because the patients are technically on my service, but our surgeons are very attached to their patients.
Kristyn 25:04
Yes, they are.
Dr. Reddy 25:05
Yeah, you know, as much as we can communicate, we can, but there is a portion where they're sort of, you know, busy doing other things.
Kristyn 25:12
And I think that's something, that's important for, you know, certainly for us as patient-families to understand too is that, especially if we're inpatient or recovering from surgeries, wheeeew, those four walls get pretty small, pretty fast, right? And so, you know, it can be, I think it kind of oscillates between total isolation and almost suffocation. And so you're, you're either...you feel completely alone in that room, or there's just so many people and so much going on, and you don't quite know who to follow or who to ask and everything. So, so I think it's good to know that like, all these doctors and specialists that are kind of flying in and flying out, and, you know, there, there are conversations, and there is communication behind the scenes or outside of that room.
Dr. Reddy 26:03
When I'm on inpatient service, I call it the endless rounding because, you know, I round with the surgeons, and then I round on my own with all the kids, you know. So I, and I'm not an auditory processor. So I scan all the numbers myself, I look through everything with my own eyes. And then we do sit down rounds with the medical students and the residents who are on the floor. So then I hear the information all over again. And their exam, you know, their presentation, and it's an opportunity for teaching and just to kind of get them on the loop with you know, what our thoughts are for the day. So yeah, it's like three times kind of rounding on the same patient but. And then we come into the rooms and then we talk to you.
Kristyn 26:39
And we ask all the questions all over again (laughter).
Dr. Reddy 26:42
That's okay!
Erica 26:53
Dr. Reddy joined Luke's care team a few months after his third heart surgery. He was hospitalized due to life threatening complications that were stemming from tissue regrowth near his aortic valve. This meant that they would be facing this same risky heart procedure, again. The stakes were extremely high in this situation, because Luke was less than a year out from his last procedure. And this time, there was no guarantee that it would fix things, or that they wouldn't be facing the same risky procedure again and again. As you can probably imagine, these incredibly stressful circumstances are not ideal for meeting new people, let alone a doctor who is completely new to your care team. For many parents of medically complex kids, the idea of establishing care with someone new is terrifying and overwhelming. Kristyn describes the decision to bring all of Luke's care under one roof as being a very scary and daunting pursuit. I mean, it's hard to figure out in that situation where to even begin. How do you establish a relationship and catch them up to speed on your child's extensive medical history? Enter Dr. Reddy. Now, despite the high volume of patients she sees on any given day, she remembers her first time meeting the Newberns. And the Newberns, they will never forget meeting her. Not because she came in and promised them a miracle. Instead, she came in with his entire medical history in hand, and she met them at their level. Literally, she got down on the floor and took the time to truly meet their precious boy.
Kristyn 28:47
We were actually inpatient with Luke and it was just for observation. We were increasing beta blocker heart medication dose, trying to deescalate a complication and Luke had tissue growth that was near his aortic valve and it had occurred after his third heart surgery. So we were there to watch how his body was responding to the medication change, or dosage change. So even though it was our least invasive, inpatient stay that we've had to date, we, I mean, we were at our wits end on that stay. The reason being was that Luke was just seven months out of his last surgery, which was very unexpected. It was open heart surgery and we believed, at the time, that it was successful and it was successful. But we saw within this seven months, this drastic tissue growth reoccur. So less than a year later we were inpatient, monitoring the situation and finding ourselves facing the same repeat open heart surgery. But now with a higher risk, because we're less than a year out from already having that unexpected open heart surgery. We also knew that even if we had to go through this whole additional open heart surgery, again, repeat this, even if we got through all of those hurdles, there was no guarantee that we wouldn't be sitting here in that same spot with the same problem a year later, wondering what in the world we're going to do next. So I mean, helplessness was a state of being for me at that point. And I'm sure I wore it right on my sleeve during that time.
Dr. Reddy 30:44
Well, you guys, you seemed just tired. And, and, and just disappointed.
Kristyn 30:49
So that is such a such a kind way of putting where we were at that spot. And at the same time, because Luke's heart journey was it was getting more and more, I don't know if complicated is the right word, I'll say uncertain. We were deviating from the original plan. And Luke's heart was responding in ways that were unexpected. So my husband, Kevin, and I at that point had decided that we wanted to bring all of Luke's cardiology care under one roof, one literal roof and bring his cardiology care to a cardiologist that was at Cardinal Glennon. And so we were very nervous about finding a new cardiologist for Luke at that point, especially with everything that he had going on. Super stressed out, I mean, we were probably like borderline frantic. You are so nice to say, disappointed, boy. (both laughing) And we had just learned about Luke's genetic mutation and that it might be having effects on his heart. And still, you were not scared away from us. And actually, Dr. Reddy, I remember you walking into the room and quite the opposite of being scared off, you actually sat down on the play mat. Next to Luke picked up a toy, started to play with him and not in that, like stagey photo-op type of way. But you actually were just interested in the tower he was building. And I remember you talking to us, and not above us. If that makes sense. Or down to us. You asked all of us questions, including Luke. And I was just sitting there thinking like, what would the chances be the Dr. Reddy would be able to take on another heart kiddo and would be even interested in adding us to your patient roster. And here we are. And you did. I don't know if you remember our first actual clinical appointment officially with you. I very, very much remember it because you walked into that patient room and you had files, you pulled up echoes, like historic echoes from when Luke was a baby. You talked through test result histories. And you had even done your own research on Luke's rare genetic mutation. And it felt like a literal weight was being lifted off of my shoulders -that I had a true partner, like someone was on my team, and that someone also happened to be an expert in her field that was directly beneficial to Luke. I felt like I mean, I truly felt like crying in relief. But again, I figured waterworks were probably not the best first impression to give the first time. So my question for you, after all, that is, what is your process when you have a new patient coming? And, you know, maybe specifically a patient who has a pretty significant medical history already. How do you prepare? Or perhaps research? Or how do you make yourself ready? And when do you feel confident that you're ready to take on that new patient?
Dr. Reddy 34:12
I'm always, you know, I'm always happy to take on new patients. Really, if you know, if somebody wants to come to Glennon and wants to be seen by cardiology wants to see be seen by me, I'm never gonna say no.
Kristyn 34:21
Even if they're at their wit's end....
Dr. Reddy 34:22
Even if they are at their wit's end....Yeah. Yeah. I can't promise I am going to be a miracle worker, but you know. I'm, I will be happy to rise to the challenge. Let me put it that way. Yeah, it is. It is different when you're starting from like, you know, a fetal family where you're kind of getting to know them and processing that information with them and kind of preparing them and, you know, that journey is, you know, no less complicated at times, because as you said, there's twists and turns that none of us can prepare for. But that that trust level starts back there already. And so that makes things a little bit easier, in some ways. And then and then you know, I'm following along from the get go so right. You know, I'm nosy and so you know, if I know that my patients are in-house or, you know, I'm really I'm pretty, you know, particular about like, how I, you know, how I want my kids to be handled or, you know, just want to be involved in this decision making about even things as much as feeding, you know, it's those things are still really, really important to me, because they're important to families, and every family is different. And so, I, as you know, I do not like cookie-cutter medicine, you know, I don't like, my nurse practitioner makes fun of me, because I always say, I don't like policies and procedures and protocols, you know, because there are numbers, and then there's just the kid, right?
Kristyn 35:33
I love that you said that, because I think that's something that we have really experienced with you and that I admire about you because sometimes, you know, medicine almost feels like, like a flowchart, right? Like an algorithm if yes, then this right? Especially when you're dealing with a rare diagnosis, or when there's kind of an extra layer of complication with, like, for example, Luke's genetic mutation, that's, it's never, it never quite follows the flowcharts. Right? And maybe you can help clarify this, but I don't know how many kiddos on your service really do follow any sort of...
Kristyn 35:38
They dont'. They never do. I always say they drive the train, we're just along for the ride. It really is...
Kristyn 36:19
Yes!
Dr. Reddy 36:20
...is different, every kid's different. And every family's, you know, lifestyle, and, and what makes their family work is different too. And is you know, like that stress of trying to hold your family together and hold your family unit together. And, and have a, some of you have you know, have a great relationship with your child where it's not, you know, you don't feel like it's antagonistic, especially with things like feeding or taking medicines. There's not a one size fits all, unfortunately. And so I've learned, you know, that you just have to be flexible and figure out, you know, you take your wins where you can, and it may not be perfect, but as long as you're moving forward, like that's the most important thing. So...
Kristyn 36:58
And I imagine, maybe one of the unique challenges with pediatrics is the fact that you don't have one patient, you have a patient, and you have people who care about that patient, more that patient even realizes. And like you said, they have different parenting styles and different preferences. And I mean, I feel like you probably also have, you know, a therapist hat, right? Right beside your, all of the other hats that you wear!
Dr. Reddy 37:27
Yeah, even within a family, you know, you know, most parents sometimes aren't on the same page, either. Both with dealing with the challenges of being inpatient, or having a sick child, you know. I feel like part of it is, is just gender in general and I think how they approach problems, and that's been sort of fascinating, seeing that consistency through my families. But then also just stress that it puts on the relationship, and then how, you know, different roles kind of switch up. And there's some that are Yin and Yang, and there's some that are just oil and water. And...
Kristyn 37:31
I'm sure there are big differences, too, between seeing those families at a regular routine clinic visit, and then at inpatient, you know?
Dr. Reddy 38:07
Yea, I think that's, I think that's what helps. Like, I always, you know, hope that I prepare people enough in our clinic appointments and have that relationship with them so that when they are inpatient, you know, that they are prepared and kind of, you know, again, you know, I know you I use the word trust a lot, but you know, at least trust in, in the health care process. And I hope that they believe that everybody is there and you know, pulling 150% for their kid, even if it doesn't always feel like, you know, things are working in that way. And you know, things are out of control. But, you know, really, I wouldn't work somewhere where people weren't, everything that they were doing wasn't for the benefit of the child. It just doesn't always kind of get translated that way. But...
Erica 38:52
Every doctor has their own unique approach during appointments or at the bedside. For those of us who have a long and complex medical history to cover, it can feel really discouraging for a doctor to come in and say, "So what brings you here today?" It is so hard to know where to start. And the pressure to not miss a single important detail is overwhelming and anxiety-inducing to say the least. The personal stress of this interaction, it can overshadow the heart of the act itself, which may be as simple as the doctor trying to relate to us as people rather than reading our data from only a screen. And as someone who believes in the power of a person's story, I was surprised to find that I had not really considered that perspective before hearing Dr. Reddy's explanation of preferring the personal story while in the room, as opposed to learning about the patient only from the notes in the electronic medical records.
Dr. Reddy 39:53
I don't always have information ahead of time. I like hearing it from their perspective first, too. Because there are things that they noticed or picked up on, that is interesting to the story that I wouldn't get in the medical records, you know? Or...
Kristyn 40:05
Yes!
Dr. Reddy 40:06
You know, things that they noticed or things that they, you know, they know are particular about their child or how they reacted to certain things that would be interesting. So I normally take notes first. And then as much as I can go back through records and try and kind of piece it together. For me, it's important to know, you know, all the details. And it's also been a part of their journey, because I, even every kid, and every kid's heart lesion is different in the course that they take. And so knowing what's worked in the past, what hasn't worked, and all the hiccups that have happened along the way, I think are important to know how you move forward. It's sort of interesting, you know, you, you hope with electronic medical records, that everything is universal, but it's never that easy. And I love when families come with records. But despite them being back several weeks, probably ahead of time, you know, by the time it trickles through getting clearance, it's sometimes it's only like 10 or 15 minutes before the clinic appointment. And so, you know, for me, in particular, I normally will skim unless I you know, unless I have an idea of what's going on. But I feel like it's really more important for me to just, you know, learn the chronologic story of their, of the child's life in their, in their health history from the parent's perspective, because it is a journey. It is a story and the medical facts are are definitely pertinent, but it's the it's the subtle kind of in between things - you know, their reactions to anesthesia, how they deal with IV's. Have they had bad caregivers, you know? Have they had a health care provider that didn't address the need that they had, or, you know, had a bedside manner that didn't work for their child or didn't work for them as a family is important as well. Because, you know, I've learned everybody takes information, whether it's good or bad in different ways. And so that's always been helpful to hear sort of how their interactions and, and their experiences in both a critical care setting or just in an inpatient hospital setting as well. But then, then yeah, then after the appointment, normally, I sit down and as you know, I'm kind of particular as I think we pointed out, so you know, I'll go through the records and write out like, date wise and like what the surgery was, and you know who the surgeon was, or even, you know, the device that was used. I just feel like if you could just gather all your information also into one, if someone can gather information into one record, even if it's just my note, you know, if somebody else can find a benefit from that down the road as well, you know, at another health care provider, in another specialty, if it makes their job easier than by all means, like, you know, we're in it together for the sake of the kids. So...
Erica 42:32
To give you a little history, the process of charting or documenting in a patient's medical record, it has evolved drastically over the years. I remember when the majority of my medical history existed primarily on paper and bound by several three ring binders. Electronic Medical Records, or EMR's, they were designed to make it easier for medical professionals to document, track, and share a patient's medical history between providers and institutions. As with most technology, there are a variety of different EMR software systems, each with their own design. And of course, even those are updated continuously to keep up with the times. But that doesn't always mean that they make the process of charting any easier. Sometimes the number of updates new options for getting to the same screen, it can be overwhelming and confusing.
Dr. Reddy 43:31
Like that Superman quote, "With great power comes great responsibility." It's interesting, you know, there's some people that chart while they are in clinic and I get that that makes you a very efficient physician, but like the thought of trying to chart and also not like being able to speak to you and not being able to develop that rapport and have like eye contact and just that general like back and forth. You just can't do that with a computer screen and there's no set of clicks that's going to encompass like what we talked about at an appointment, right? Like we bounce all over the place we talk about Luke's school, and Ozzy, and life, and what are your hopes for him? What are your worries for him? And you know, there's no checklist that's gonna encompass that
Kristyn 44:08
I was just gonna say among some of my heart mom friends we call that a "Screentime Doctor."
Dr. Reddy 44:14
Oooh, yeah.
Kristyn 44:14
So they come in and you know, and like you said it's very efficient or perhaps you know, they're doing a fine job, but imagine like the journey, the hours of driving that Erica makes to you know, even come to that clinical appointment and then let alone the planning the schedule everything else for some of these kiddos it's, it's the entire day is dedicated to getting there, right. And sometimes multiple days to have this visit. And then to have the person that you've been waiting for and preparing for this whole time, come in and not not even look at you in the room.
Dr. Reddy 44:50
Yeah. And I feel like that's the best part of the day, right? Is finding out like what's going on in your life. Like what is what's new, what's different, what's even what's new in your family life, you know?
Kristyn 45:01
Yes!
Dr. Reddy 45:02
How that fits into the general picture, you know, with siblings and life or life stressors, life changes. And, you know, I always feel bad. Like, I always go out of home running late, like, It's my biggest pet peeve. I try really hard that even if I'm only in there for a short amount of time that I know, I've answered all their questions, and I that they feel like we've had quality time. Even if it's not very long,
Kristyn 45:22
You're probably running late because of patient families like us! (laughing)
Dr. Reddy 45:28
I'm wearing heels that day is just like click, click, click, click, click, back and forth. And like the poor students are just like trailing behind me, and I'm like, "Okay, we're gonna walk and talk right now. Walk and talk."
Kristyn 45:37
Yes! One of my favorite tracks on the Dr. Reddy album is that you, you did your research on Luke's genetic condition, but there's not very much research to do, because it's so new. And so you connected us with, I want to say he's maybe one in the only in the world, cardiologists and geneticists who focus on Noonan Syndrome, in general, out of New York. And so you made that connection for us. So I truly appreciate that. So I would like to ask you, because I've told you a lot about what has brought us joy from your career, but what brings you joy, specifically in your role.
Dr. Reddy 46:29
So I think probably the greatest joy for me is, you know, seeing these little kids grow up and like who they become. It's crazy that like, years go by, like, you know, because it feels like it hasn't been that long since I've seen you, but then I'll look at the date. And I'll be like, it's been like six or seven months! Time is just flying. And, you know, they go from being these little squishy babies, you know, they start lengthening out and becoming toddlers, and they have their own opinions. And, and so that, for me is the biggest joy, is getting a family through the hardships and some of the really bumpy, rocky parts so that there is, you know, some peace at the end. Even if it's for a short amount of time. And kind of just getting to see those really fun moments where they get to be a kid and the family gets to be a family and not, you know, not be at the hospital. That for me is probably the is the greatest joy. And that's what keeps me going, you know. Getting to see the kids everyday and like them being able to tell me about their lives and who they turned into is, is the greatest joy.
Kristyn 47:23
has anything surprised you in your career that you maybe didn't anticipate that you would love or be passionate about?
Dr. Reddy 47:31
I think probably the most surprising thing was, you know, I really enjoy the kids. But I've been surprised at how much I've enjoyed talking to sort of the teenagers like the 16 year olds to like probably maybe like 20 year olds.
Kristyn 47:44
Really???
Dr. Reddy 47:45
I inherited a lot of them, because as you know, like my crew, you know, have kids, you know, mostly younger, in general, starting from like my fetals. But I do have a lot of kids I've inherited and kind of gotten to know and so that's been kind of fascinating, just like seeing who they are as adults and in this world and trying to navigate, you know, being responsible and asking questions about careers and jobs and just life in general. Life with congenital heart disease, too. It just sort of been interesting, the questions that come up that, you know, I wouldn't think of. And, you know, I always tell them, "You're going to have a sex, drugs and rock'n'roll talk for me." You know, I pull them away from their parents, and they're like, Oh, my God, this is the worst, you know, they're horrified and mortified. But I'm like, "You don't have to say a word. You don't, I just have to talk to you about it." And trying to, yeah, just trying to reassure them that like, you know, I will be continuing to talk to them. And I know what we say is confidential, but I need to know the truth. There's things I don't even know about in the community that I'm like, "Oh, wait, what is that, tell me about that." \
Kristyn 48:43
Luke is four and a half, I cannot imagine a time where I am not in full control of everywhere he is and everyone he's with and all the decisions that are being made. But that's going to come very fast. And so, I you know, in like you said, that's difficult for any teenager or pre-teen to be navigating all those potentially dangerous situations or decisions. And now you add all of this complexity, with health and with congenital heart defects, and with all these things. My goodness, please have all those conversations. And I'm so glad that you do!
Dr. Reddy 49:22
Something as simple as like a scar, you know, not just even, you know, kids with congenital heart disease, but any procedure that you've had. It's a very, you know, at least with a, you know, a sternotomy scar down that you've done the chest, you can potentially, you know, cover with clothing during the day, but if you swim or you know, kids start going to gym class and start changing clothes, people start asking questions. It's almost easier when they're younger, because, you know, kids are a little brutal these days when they get older. And so, just even learning how to navigate, you know, answering those questions of them being different and being seen as different.
Kristyn 49:55
Yes.
Dr. Reddy 49:56
And like sometimes they have they have questions, but they don't want to ask their parents because they fear that they've already burden their parents enough with worry, too. Which was a really kind of heartbreaking discovery. You know, it's a really big goal of mine to have these kids be much more independent. And you see that struggle when they start to come as teenagers where, you know, even if you pull them out of the room, they both come with both parents, and the parents do the majority of the talking. And you can just sense that there's stuff that they want to say or...and so like navigating that relationship with trying to empower them to be in charge of their health, because that's ultimately what I want. But it's so hard for the parents to let go. One, because they just don't trust they're going to take care of themselves and follow through. But but you know, unfortunately, that leads to like 28 year old patients with their moms still calling us, you know. And you're like, "I really, I really feel like you should call me yourself. And not have your mom call me."
Kristyn 50:53
I can sympathize with both sides of that. For sure! And you're so right, it's because we have that trauma, still, as the parents who like - the consequences are just potentially that much greater for making, you know, kind of a frivolous mistake. But you're so right.
Kristyn 51:13
So finally, in the true spirit of Atypical Truth, I will end with our favorite dream scenario. let's pretend for a moment that a miracle has happened overnight. And suddenly, without warning, pediatric cardiology became the perfect and flawless system that you had always dreamed of. Without anyone telling you that the miracle had occurred, what would be the first thing that you would notice to indicate this change?
Dr. Reddy 51:41
That's a really tough question. I would say that, I would notice that children were living longer with sort of, without an expiration date. Or without, you know, complications and a certain time period. Because for certain lesions, there is definitely a longevity to the surgeries, the palliative surgeries that we do. And that's really, probably the hardest part is that, you know, you have these little babies, you get them through these really critical years. You love them, you grow them, you get to know them, and they start becoming these humans with all this promise. And that's kind of when the organ starts to fail. And, and, you know, and so that's the most frustrating part is, is getting to that, that endpoint when they're really at like sort of the cusp of life. And then that's when no matter what we've done, and what we have up to now isn't enough. And so that would be a beautiful way.
Kristyn 52:41
I love that you answered with that, because I think that's something that is not very widely known for our heart kids. You know, and so often, I am asked the question, "So is everything good now?"
Dr. Reddy 52:56
Yeah.
Kristyn 52:57
Or, "Is he all better now?"
Dr. Reddy 52:58
Yeah.
Kristyn 52:59
You know, in from the most well intended of people who were asking that. And it is. It's a sobering thought what you just said. And it's also something that has taken me all of the time, and I still continue to learn and try to like, live in each day that we are in, but yes, that that life long struggle, the finite amount of help that sometimes exists. I think that's, it is it's something that I would love to change as well. And, you know, perhaps it will.
Dr. Reddy 53:41
Perhaps it will. Technology is moving at a rapid pace, I will say. We are grateful for that in our, in the pediatric world, I'm very grateful for that, that things are moving faster.
Kristyn 53:50
Dr. Reddy, thank you so much for coming on to this podcast and giving us this - I don't know this amazing, not only information but just perspective that I don't think anyone is asking their cardiologist about during clinic or, or during a surgery recovery. And so I think you've just really opened my eyes not only as your patient's mom, but also just as family of a kiddo with complex medical needs. Really appreciate you being here. And thank you so much for your time.
Dr. Reddy 54:27
It was my pleasure.
Erica 54:35
Think every patient deserves someone like Dr. Reddy on their care team. I so appreciate that Dr. Reddy gave us the behind the scenes tour of life as a pediatric cardiologist. This conversation really broadened my perspective of all the responsibilities that health care providers balance outside of seeing you in the exam room or the hospital room. Gaining insight like this is so critical to society at large, especially during a time when our friends in health care are experiencing immense stress and pressure. It is important to remember that at the end of the day, they are people to just like me, and just like you. So thank you, Dr. Reddy. I appreciate you providing this perspective for us all.
Erica 55:31
I'm excited, and a bit nervous to share that our next episode will be a performative piece, if you will. Through storytelling, Kristyn and I will weave you through the memories of both a mother and a patient, as we guide you through the experience of preparing for surgery day in the recovery that follows. Yes, we will be sharing about the fears and anxieties that families face on surgery day. But more than anything, this episode is a special tribute to the love that binds us. So stay tuned, because in two weeks, we have something very special in store for you.
Erica 56:20
Okay, here's the thing, if you're one of those people who listens to the episode all the way through then you've probably heard me share about the merch that is available on our online shop, and my suggestion to donate $1 If you liked the episode. Well, I now have some exciting news about these proceeds and how they will be distributed back to our community. As we work on obtaining our official nonprofit status, Kristyn I decided that the proceeds raised from Season Two of Atypical Truth will go to families who are experiencing long hospitalizations. We will be partnering with some amazing advocates who I will announce at a later date. We're putting together goodie bags that are catered to the needs of families experiencing those long dreaded hospitalizations. So if you love this show and you want to show your support, please consider donating $1 for each episode. While a little bit helps to maintain this podcast, everything else is donated right back to our community.
Erica 57:22
One of the most meaningful and totally free ways to show your support for this show, is to subscribe, rate and review. By subscribing to the show you'll automatically get notifications when a new episode is released. And by reviewing you will help to make this podcast more visible to others. I can't express enough just how much your words of encouragement mean to me and the guests on the show. We share our stories with the hope of helping others and it brings us so much happiness to receive that personal validation from our listeners. We love it so much that we proudly shared it on our website and social media. So thank you for all of your support your participation as the audience is deeply appreciated.
Erica 58:07
If you can relate to this content, and you're interested in guest hosting a season of your own, don't hesitate to reach out to me, you can reach me on the website at www.atypicaltruth.org. Or you can also find me Atypical Truth on Facebook and Instagram.
The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collective Amiina. The cover art for Atypical Truth was designed by Eric McJilton.
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