“Congenital Heart Disease in Newborns” – with Dr. Miwa Geiger

Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness.
Dr. Miwa Geiger, I’m so happy to have you here and have you on the podcast. How you doing?
Dr. Geiger: I’m great. How are you, Natey?
Dr. Fox: I’m just wonderful. This is awesome. So, Miwa, as you know, and our listeners are gonna learn, you’re an associate professor of pediatrics and cardiology. You’re the director of the Fetal Heart Program at Mount Sinai, and, most importantly, you’re in the Mount Sinai class of 2001. Miwa and I went to medical school together.
Dr. Geiger: We sat next to each other.
Dr. Fox: Yeah. We sat alphabetically, so it was Fierstein, Fox, Geiger.
Dr. Geiger: Yes.
Dr. Fox: Gelfand.
Dr. Geiger: Yes. I don’t know if they do that anymore.
Dr. Fox: I don’t know. I don’t know if they have those labs anymore. We had these, like, study, like, cubbies I guess they were called and they sat us alphabetically.
Dr. Geiger: And the desks came down.
Dr. Fox: Yeah. We kept our microscope there and our books and…
Dr. Geiger: We had one of the best views of Central Park.
Dr. Fox: Yeah, it was really, really nice. Right, so we were literally right next to each other. You went from there to Yale for your peds residency, and then out to California for cardiology and fetal echo, and then back to Mount Sinai.
Dr. Geiger: Yeah.
Dr. Fox: Wonderful. How you doing now?
Dr. Geiger: Oh, good. I’m good. You know, fetal echo is something that, you know, I found fascinating for some time during my fellowship and it just, you know…To me, it’s something that’s expanding and growing and always holds your interest, so, you know, I’m glad I made this choice. It was kind of luck. I always just thought it was cool. But yeah, I’m happy.
Dr. Fox: What percentage of your practice is seeing fetuses, meaning moms who are pregnant, versus seeing the babies or children afterwards would you say?
Dr. Geiger: Well, I would say, honestly, it’s about…most of my time if you divvy, let’s say, a week is spent reading echos. I only see patients usually about one day a week, sometimes they add on here and there. But usually I see kids one day a week for a full day. And I usually do fetal echoes about 10 to 12 patients once a week, and then the other days, I’m reading echoes.
Dr. Fox: Excellent. And we had a podcast about fetal echoes from the OB/MFM side with Jen Lam, so we’re not gonna rehash everything with you, although we did at the time talk about, sort of, our relationship with you guys in pediatric cardiology and how that’s so important back and forth. But I wanted to focus today more on the congenital heart disease side of it because it’s not just the diagnosis, obviously, which is sort of what we focus on in the ultrasound, but it’s a whole world of diagnosis, management, surgery, medication, follow-up, counseling, anxiety, reassurance, and this is like the world basically you’re in pretty much all the time I assume.
Dr. Geiger: Yeah, yeah.
Dr. Fox: Yeah. So in terms of congenital heart disease, you know, it’s about 1% of births, give or take, a little bit less, you know, plus-minus. How wide of a range is that if I just say congenital heart disease?
Dr. Geiger: Yeah. It’s a huge range. I mean, it’s getting better and better, but, you know, initially, the things that get picked up prenatally are the obvious things that are just like the heart is really different than normal, and then there’s other defects or subtle abnormalities that we may not even pick up by fetal echo. So we do have, sort of, our disclaimer of things that we cannot rule out, even if it looks normal. So I would say a large percentage are the more…I suppose they’re minor or…you know, when you’re the mom, it’s not minor if there’s a hole in the heart. But holes in the heart is, you know, sort of the most common detected abnormality. And then the other thing that’s common but not always detected is something called bicuspid aortic valve and you have two aortic valve leaflets functionally instead of three. So those are the most…you know, if you’re studying for your boards, those are the kind of most common things, and those are the things that actually don’t always get detected by fetal echo.
Fetal echo, the better it gets, the more you can detect these subtle nuances. But, you know, especially in the beginning, a lot of these things, the severe things that are a little more rare. But, you know, having one pumping chamber instead of two, that’s more obvious so it’ll get picked up by the way…the sort of number one high-yield indication for getting a fetal echo is that someone like yourself picks up something. And all these other reasons that we have to do echos, diabetes, family history even, usually end up being normal, whereas, you know, when there is congenital heart disease, it’s usually someone who didn’t have any of these risk factors and it’s random. So that’s why it’s so important for the OBs and MFMs who are doing the screening who are actually looking at the anatomy scan do, you know, the great job like you guys do at picking up, you know, sometimes subtle things. But yeah, a lot of congenital heart disease is on the more minor side, but those may not be the ones that we pick up.
Dr. Fox: Right. And it’s so interesting, I think, the difference between my perspective and your perspective in that when I see these women and we suspect congenital heart disease, or we know that there’s congenital heart disease, we’re really focused on the pregnancy to the birth. But when you’re seeing them, you’re focused on the pregnancy to the birth and then beyond. So the conversation with you is gonna be much different from the one with me. With me, it’s, “All right, what are we doing during pregnancy? How often are my visits? You know, when am I gonna deliver? How am I gonna deliver? Where am I gonna deliver?” Fine. But with you, they’re talking about, “What’s my child gonna be like when he or she’s 50?” And you have to go into all of that. And how much of that do you get into right away? Or how does that journey work? Someone sees you and there’s a congenital heart disease, how do you address that?
Dr. Geiger: Well, I mean, the more I do this, the more I learn, and I have definitely changed over the years. So now I kind of try to give the big picture a little bit more in terms of, you know, when you sit down…Also, every family is different. So they have a different educational background, language barrier sometimes, coming from different social backgrounds, but I kind of try to assess how much they know so far about what’s going on because sometimes coming from, you know, the MFM’s office and they know something’s up. But I sort of try to give a little bit of a big picture. Like, this is sort of medium severity or this is quite minor. You know, it should be fixed with one surgery and life will be normal after that, and then go into the details. And you do have to, sort of, assess each, I guess, woman or couple on how much they want to know. When I first came out of fellowship, I used to give them a lot of information about what the baby would look like after birth, the procedures that would be required, and sort of get them step by step through, say, early adulthood, and it’s a long consult.
But then you realize, and the thing that has made me change the way I do things is that at a certain point if they’re in shock, they don’t really hear past the first two sentences or so, and that’s normal, right? And so it’s hard because you do feel, as the physician, obligated to tell them as much as you know and some of them wanna know every detail. But sometimes if it’s the first time they’re hearing this, they’re not gonna be able to absorb most of what you say. And there are studies that look at how much, you know, they feel they absorb or how much…you know, kind of like a little quiz about the anatomy and prenatally diagnosed versus postnatally diagnosed, and even the ones that are diagnosed after birth also, the family gets explained, but they’re in so much shock that they can’t absorb.
So sometimes we do it stepwise. I mean, I kind of give them the big picture if there’s consideration of not continuing a pregnancy, then I try to give them the big picture of how involved the care is gonna be, you know, if this is going to be something that’s gonna limit their lifestyle or quality of life, let’s say, which is subjective, obviously, so that’s tough. But you know, how many surgeries would they need during childhood, say? How long will they be in the hospital after they’re born? So those are kind of big things that people wanna know. And are they gonna be on medications is a very popular question. But sometimes you just have to slowly ease them into it as the visits go on, so we typically see patients, depending on what the fetal diagnosis is, about every four weeks and that’s not always…you know, we take the pictures and see if anything’s changed because things can change with certain disease categories.
But it’s also an opportunity for you to get to know the family better, for them to know their physician. We try to have the same doctor see the same patient each time. And the family’s learning and they’re absorbing things and they’re…You know, there’s an initial stage for significant heart disease, a sort of grief for a normal pregnancy. They were anticipating having a normal baby and this is sort of…Even though they’re continuing the pregnancy and they know that that child’s gonna need, you know, some heart surgery, there is a period of grief. And I think people also, depends on how you adapt to that, but get over it and kind of take more practical steps. And I see the couple, kind of, changing in how they are moving forward with the pregnancy and more practical, “How many more visits? Should I be induced?” And all that stuff.
So I kind of slowly try to paint the picture over time. But definitely, the first visit is tough because you kind of have to…If you’re making a decision about continuing the pregnancy or not, you kind of have to give sort of the big picture of what you expect, and of course, there’s uncertainties. So, you know, fetal echo has gotten really good at picking up some of the very subtle things or minor things, but the physiology changes after the baby’s born and sometimes we can’t predict how things are gonna go or things can happen that are unexpected. So, you know, one of the things that we do talk about is uncertainties and certain things that…Heart disease is certain. Sometimes patients hope that I’m uncertain about there being heart disease. That usually isn’t the case, but what’s gonna happen? And so that is also something that is challenging some…you know, and a lot of it is how comfortable families are accepting some degree of uncertainty.
Dr. Fox: Yeah. I think what you said is really important because there’s the ultrasound imaging, which can have uncertainty, meaning this is a subtle finding, I don’t know. But when we have a diagnosis usually, like, all right, the ultrasound, the pictures, it’s basically as good as it’s gonna be after birth. We know what’s going on. But as you said, there’s uncertainty because, number one, you could have a diagnosis and there could be a wide range of outcomes, right? You could have some babies who have a certain condition and they do perfectly fine and they will or will not need surgery and they’ll be healthy and live long, you know, productive, happy lives and everything, versus the exact same called a lesion, right, when there’s an abnormality in the heart, and it goes horribly wrong, and the kids are very sick. And so there’s always a range.
It could be, say, someone…Like, you know, someone’s gonna have diabetes, right? There’s people with diabetes who are perfectly healthy and do great, and there’s others who are very, very sick. Some of that is based on treatment and some of that’s just luck as far as we know. And that’s other uncertainty. The final uncertainty is, when we diagnose them, we don’t always know the extent of it, right? Because then there’s, well, is there a genetic component? Do we have to do an amnio? Then there’s time for testing and also with…you know, there’s a whole business about whether the children, if they have congenital heart disease, will there be sort of an effect on the brain during the surgery? And so there’s a lot of variables we just can’t know at the time of diagnosis.
Dr. Geiger: Right. So the other thing is, as we detect these things earlier and earlier, I know you guys are doing, you know, early anatomy scans at 16 weeks, but sometimes we get patients that are 12 weeks, we find something, and things can change during the pregnancy. As the fetus is growing, if this side of the heart does not grow accordingly, then it’s a whole nother pathway than if it does grow pretty well and then, you know, it kind of dictates the type of surgeries and, you know, honestly, how complex the surgeries are gonna be. And that is something that…One of the reasons that we see people every four weeks is to see how things are progressing or not progressing. The structures can change, you know, things can change. You can see one thing at 20 weeks, and then at 30 weeks, it’s different. So that’s another uncertainty.
But as you mentioned, the other really important focus that, you know, I’d say over the last 10 to 15 years has been the brain and how children with congenital heart disease…you know, there have been definitely studies that have shown areas where they’re behind, but not all, and that’s something that’s not predictable. So that’s an uncertainty because we do have patients who have fairly complex congenital heart defects who are completely…you know, go on to college, having normal jobs. You would never know unless you saw them without a shirt on that they had anything wrong. And then you see patients that need a lot of help with school. You know, something that’s fairly common is ADHD and depression in cases of significant heart disease.
So that’s obviously not predictable prenatally, and that actually is probably more impactful for your quality of life and your family’s life than whether they had surgery or not. You know, the surgery happens. They get out of the hospital. You might have to take some medications. You might have to see a cardiologist every year. But the day-to-day stuff like how they’re doing in school or behavior, you know, is actually, you know, hard to predict but probably more important.
Dr. Fox: Yeah, no, I think that makes a lot of sense. As a parent, it’s gonna be more day-to-day, right? Again, because most kids if their heart gets fixed, so to speak, they’ll do well from a physiology standpoint. Some don’t but most will. But if the child grows up and has learning issues and, you know, anxiety and depression, that’s gonna be tough.
Dr. Geiger: Yeah.
Dr. Fox: Do you find it helpful when you’re initially talking to parents? You mentioned things like, well, it’s minor or not. I mean, there’s all these, sort of, you know, the way we categorize heart disease and critical or not-critical, or cyanotic or not cyanotic, and ductal dependent and not ductal dependent. Are those things that are helpful to you when counseling or are those just helpful in terms of your own categorization and maybe with your fellows and residents and whatnot?
Dr. Geiger: Usually critical and non-critical is related to ductal dependent. And so that is helpful in the sense that people know how to treat the baby when they come out. So if it’s a ductal dependence…So for the listeners, the ductus arteriosus is a blood vessel that connects the main two arteries, the aorta and the pulmonary artery, that’s part of the normal fetal circulation that normally is sort of programmed to close once the baby’s starting to breathe on its own and out. But in certain heart defects, you actually want that to stay open because there’s not enough blood flow to the lung artery or to the body artery. And so sometimes we want to keep it open and there’s a medication that’s given intravenously that can keep it open. So one of the main purposes, and I think especially early on in fetal echo, is to just to figure out is this what we call ductal dependent? Do we need to give the prostaglandin to keep the baby alive in the first day of life or not? And then we sort out the details after birth.
And so that’s sort of just the language we use amongst, say, neonatologists and, you know, MFMs and cardiologists to say, “This baby needs to go to the NICU and needs to get an IV. It needs to get started on prostaglandin.” And then sometimes we’re wrong. So sometimes we keep that open, but then it turns out, “Okay, well actually, there’s a little bit more blood flow to the lungs than we thought. Let’s try stopping the medication, and if there’s enough blood flow to the lungs in a controlled setting of being in the NICU, then actually we can send the baby home with close follow-up and they don’t need that medication.” Or if it’s the other way around, they get too blue or cyanotic, we know that we need to do a surgery or a cath procedure before the baby goes home. So that’s sort of mainly for the providers, I would say.
And then the other category I would say is, sort of, you know, for the family in terms of, like, people wanna know…Some people, they wanna know every detail and they’ll look up the diagnosis online and all this and do a lot of research. But some people just wanna know like, is my baby gonna be normal or not, right? And so, you know, it depends on what you mean by normal. But I kind of think like…There’s certain defects I would say are medium. Like, they have two ventricles, which are the 2 pumping chambers, but they will need 1 or more surgeries over, say, 20 years to, sort of, keep things going in the right direction. So I would say that’s sort of medium.
Dr. Fox: I would think that the first question they say is, “Does my baby need surgery?”
Dr. Geiger: Surgery, yeah. And sometimes that’s even hard to detect. For example, relatively simple, somebody with a hole in the heart. So holes in the heart can be between the top chambers, ASDs, or the bottom chambers, VSDs. ASDs are very hard to diagnose prenatally because there’s supposed to be an opening there. VSDs are holes between the bottom chambers of the heart that are not supposed to be there, but sometimes we cannot see them, and sometimes we can see them. Both of those things though after birth don’t make anyone sick at birth, and usually those babies, if that’s all they have, can just go to the regular nursery. And those holes can get smaller with time depending on the location and size. And so I can’t say sometimes if someone’s gonna need surgery if they have a hole in their heart because it may get smaller and close, or it may get so small that we feel it’s not necessary to do surgery. So some of those things, that’s one of the uncertainties.
But for example, like the medium defects, those are things that you know will need surgery. Tetralogy of Fallot, AV canal, I would say those are…You’re gonna have biventricular circulation, meaning you have two pumping chambers, and you can make the blood go the correct way. You may need one surgery, but you may need tune-ups kind of. Sometimes if you have Tetralogy of Fallot, you have your initial surgery, but then you might need pulmonary valve replacements every 10 to 15 years. So that’s sort of I would say, kind of, a medium-level heart disease because you definitely need something and that you have to go to the cardiologist and you may need something again, but in general, people do well with those things. The first year may be a little bit tough for the family, but generally, people do well.
And then there are the more severe categories where they probably don’t have one of the pumping chambers adequately, you know, sized, or their valves are situated in a way that we can’t actually have the blood flow going to the correct pumping chamber. And so some of those patients undergo what we call a palliation or single ventricle pathway, which is when one pumping chamber is doing all the work and the blood flow gets redirected by surgeries to go passively to the lungs. And so those babies these days are now doing better and better. But still, those patients I would say have more limitations. They have long-term complications usually by their, you know, 20s or 30s. Some of them will need heart transplants by the time they’re adults, occasionally as teenagers. Some do well, and some are doing okay but, you know, not really able to do sports, they have exercise limitations. And those patients are probably the highest group that are gonna have areas where they’re neurodevelopmentally, you know, behind, but some are not.
And so that’s, sort of, the spectrum of things that can happen. All of those, you know, minor, medium, severe are kind of the categories I try to explain to the family in the sense that…It sort of also describes how sick the baby could be in the first month because those single ventricle type lesions are things that those babies can get sick after surgery more easily.
Dr. Fox: And it’s also hard because when you talk about, you know, that’s, you know, mild, medium, and severe, which is all true, when we talk about outcomes, we talk about outcomes in 2021. But when these babies are 20-year-olds, it’s gonna be 2041 or 2042 if they’re pregnant now, and who knows? Like, maybe in 2042, you can get, you know, for a heart transplant, maybe you can order on Amazon in 20 years. I mean, I don’t think so, but we just don’t know. And if you think about 20 years ago if they had to predict what we’re doing now, or 20 years before then, it’s hard even to envision what it’s gonna be like. And that’s another thing, it may be, you know, doom and gloom now and it may be better in 20 years, or it may be no different. We just don’t know.
Dr. Geiger: Right. There’s just not that many adults, you know, over, say, 60 with congenital heart disease. But for example, at our adult congenital heart disease clinic now we see plenty of 30, 40-year-olds, some 50-year-olds, depending on what they had, and, you know, pretty normal lives. I mean, some of them had exercise limitations. A lot of them do have kids, though, depending [inaudible 00:19:15] obviously easier. And there are definitely things, especially catheter-based procedures, for example, those pulmonary valve replacements, there’s more and more options for catheter-based pulmonary valve replacements.
Dr. Fox: Meaning not having a major incision and opening your heart to do it. It’s…
Dr. Geiger: An overnight stay in the hospital. You know, you do go under. But compared to having everything opened up again and going on, you know, the heart-lung machine, bypass, you may not have to do that as frequently. So I mean, I do mention that to families when I’m counseling them that for certain diseases, we actually might have better options. I can’t predict exactly what they’re gonna be, but for sure people are working on all those things, minimally invasive approaches to the surgeries even themselves, or better surgical techniques. People are always working to make their surgeries better.
Dr. Fox; Right. How often do you find that either you or the couple are interfacing with the heart surgeon as well? Meaning if it’s something that’s…Let’s say the mild ones where you’re pretty sure they’re not gonna need surgery, fine, but in the medium, as you called it, and the severe, do they always meet with the surgeon? Do you always speak to the surgeon before and go over it? How does that work logistically?
Dr. Geiger: Yeah. So I just came from doing that. We pretty much offer anyone who wants to meet with the surgeon access to one of our surgeons. You know, certainly, anything where I think for sure the baby will need a surgery before going home from the hospital the initial time, we are gonna have them recommend a consult with the surgeon. So most families take us up on that. Some say, “I’ll just wait until the baby’s born.” I mean, either way, the surgeon has to meet with them immediately before surgery to do the consent. But most families do wanna see…like, put a face to the name and see the surgeon, even though they’ll usually say there’s uncertainties, we’ll see when the baby’s born, they do kind of want to meet the person that’s operating on their child.
The ones that are sort of uncertain, I give them the option. A hole in the heart that may get smaller. If you wanna meet the surgeon, you can. Some of them kind of wanna be optimistic like, “I’m not gonna meet the surgeon. I don’t think that he’s gonna need anything.” I leave it up to them. I mean, something like, for example, bicuspid aortic valve. It’s very hard to diagnose prenatally but I suspect sometimes, right? It’s something slightly abnormal with the valve. If the blood flow is going okay and I don’t think the baby’s gonna need anything, I don’t necessarily offer it unless they really ask.
Or the other option is sometimes they just will need a cath procedure. So aortic stenosis or pulmonary valve stenosis is when the valve is not opening well. Oftentimes in newborns, we can, especially the pulmonary valve, open it up pretty well and that might be their only intervention. So we do have the interventional cardiologists meet with the families just to give them, sort of, you know…they sometimes show them the balloon or something. You know, they kind of describe the procedure and their statistics. Sometimes parents are very numbers-based. They wanna know how many of these have you done, etc., so we definitely give parents an option to meet with either of them.
Dr. Fox: Yeah, and it’s also sometimes confusing because, for people who are not in this world, right, there’s the cardiologist who, sort of, treats the baby, the child, and does ultrasounds and reads them and medications, and if there’s admission to the hospital they [inaudible 00:22:17]. Then there’s interventional cardiologists, which is the same person but on top of that, they do procedures, sticking catheters in vessels, you know, into the heart and whatnot. And then there’s the pediatric surgeons who actually are not cardiologists. They’re surgeons who operate on the heart, and so they do operations on the heart. And everyone works as a team, but it’s hard for people to always understand, “Wait…” Like, they’re thinking you’re doing their surgery and the surgeon is gonna be the one seeing the baby, you know, afterwards, and it’s a little bit confusing, I imagine.
Dr. Geiger: Yeah, for sure. I definitely get asked like, “So when you’re operating on the baby…” Like, wait a minute, I’m just diagnosing. I’m just telling them what to do. But we work really…I mean, most centers, you know, we are kind of at a medium-sized center, but we have meetings about the patients before surgery. And nowadays, I’m actually having…sometimes we have patients transferring in to see us that I’m having consultations with us, MFM, and maybe neurology depending on what the specific thing is, kind of, the same day and sometimes the same exact time so everyone’s on the same page in the delivery planning. They might meet the surgeon once or twice max before they’re operating.
Dr. Fox: They don’t know ultimately what’s gonna happen until after the baby’s born. But I think it’s good to get a sense of, obviously, who this person is. Some parents are also choosing between hospitals if they have that option, and also just some expectations that the surgeon will say, “Yes, assuming it is what we think it is, this is something I do one a week. This is something that I expect to do well.” And, you know, that’s helpful. Or on the opposite, they’ll say, “Listen, this is something that we do but the outcomes aren’t so good.” And that’s important information for parents to know both from the cardiologist and also from the surgeon. I mean, and usually, they’re gonna be similar, they’re gonna be aligned in your counseling, but not always, and there’s different perspectives. I mean, surgeons sometimes have different follow up than you do, or different people interpret the same data differently, right?
Dr. Geiger: Right.
Dr. Fox: Like, for example, a child who’s alive but limited in sports and has learning issues, some people might say that’s a bad outcome. Some people would say that’s an amazing outcome based on where you’re starting. Yeah, I mean, it’s just sort of…A lot of it is perspective, and parents look at this differently. It’s a very tough topic to talk about because you’re taking parents who…So you’re dropping an anvil on them, right? Everyone knows the heart, right? This is an organ everyone, sort of, gets, it’s important, and you’re saying it’s not normal. It’s not built normal and there may be issues. The baby might need surgery and, you know, the baby might have health issues and potentially may not survive. And how do you do that, right?
I mean, I’m curious how you do it. I know how we do it. We have different organs in different situations. But what have you learned…? Since you and I were in the same class, I know how many times you’ve been around the block like I have. And so we’ve been doing this for a while. I’m curious, you mentioned before how you do it differently from [inaudible 00:25:01], but just walk us through how that conversation goes and what types of things come up a lot.
Dr. Geiger: So one thing I would say is it doesn’t always go the same and, like, sometimes there’s personality differences. So, you know, I try as much as possible to be understanding and kind, but sometimes the personalities don’t click. So every now and then I’ll have a patient that I had a hard time connecting with and they may wanna see another doctor. That happened recently. And, like, you know, I do take it personally. I don’t wanna say I don’t take it personally. I take it personally because I think, “Well, what could I have done better in talking to this family?” In this particular case, I think it was, you know, I kind of felt like I had to paint the full picture and some of the things were not so good. And this family had been trying really hard and they were gonna continue no matter what and they didn’t wanna hear the word termination. But you kind of have to also feel like you did right by yourself in terms of what you’re supposed to say and have the documentation that you’ve discussed all the possible outcomes.
So I think, you know, you have to talk about what…I think at least you have to mention what the diagnosis is and then the scale of severity to some extent. And then what I usually do is I ask them what they do for their occupation just to see if they have any science background and things like that, but I still no matter what, draw my own picture of the heart, normal and in the fetal circulation, and then the change that happens between fetal circulation and at birth so that they know that there’s differences between inside and outside, and how that change can actually change in a normal fetus but also in a baby that has a heart defect. And so why certain structures like, for example, the ductus arteriosus is opposed to close, why we keep it open. So I kind of also explain how the placenta blood flow goes into the heart. And then I draw a picture of what their baby has and explain sort of why at birth we expect maybe the baby’s oxygen saturations to be a little bit low or maybe not have enough blood flow to the body unless the ductus arteriosus is kept open.
And then I sort of try to go it in a very simple way, try as much as possible. There’s always time limitations, but I try to allow for time for questions after each step. So once I’m explaining the anatomy and physiology of normal, I ask them if they have questions, then their baby, I ask them if they have questions. And sometimes it doesn’t go in the exact order that you plan. So, you know, if they don’t have a lot of questions, then after I explain what their baby has, then I explain what we expect the baby to look like after birth, what the plan would be in terms of going to the NICU, when the surgery typically would be recommended, what the surgeries are. I also, if it’s complex, like for example, single ventricle, they typically need three surgeries by the age of 4. I do say that and then I ask them, “Do you want me to explain the individual surgeries?” Some people, yes. They want everything exactly told to them. Some of them are like, “Kind of, but I’m not gonna remember.” “That’s fine, but just so you’ve heard the names.” And I write it down.
And I also have someone…I think it’s really good to have someone else in the room with you. You know, it can’t always…you know, if you’re in private practice, you may not have this, but we have our coordinator who’s an NP, Amanda, she stays in the room with us and takes notes for the families so that they don’t feel like, “Oh, I forgot what she said,” or whatever. So it’s also written in my note. And sometimes we have patients record what I say, you know, or their partner’s not there and needs to hear. So I kind of ask them how much detail they want in terms of the actual surgeries. A lot of them do want to know, sort of, percentages of outcomes, like how many do well or how many die and that kind of thing, which we try to estimate. But it’s hard because you if say…even like it’s 80% survival, you don’t know if your baby is in the 20% that doesn’t. I mean, I try to give those numbers if we have them, but it’s hard because that doesn’t always tell you what your baby has.
And so the other thing that I do, and this is something that might be different amongst cardiologists, and it’s hard because when I’m counseling patients I know how I do it, Amanda knows how I do it, but I don’t see other attendings, other pediatric cardiologists counsel because if they’re there, I’m not there. But what I do, and I know some people don’t do this, is if I have a feeling of which way it’s gonna go, so some key example would be is this baby gonna have one ventricle or two? So sometimes the ventricle is, sort of, medium-small and you don’t know if they’re gonna be able to tolerate a normal…we call it cardiac output, which is after birth, both ventricles have to be able to pump equal amounts of blood, whereas, in utero, one side compensates for the other. So that’s one of the things that changes after birth.
And so if I have some data…There’s research for a reason. So you know, if I have some data that most babies with a valve size this size, if it continues to grow, should be able to have a two ventricle [inaudible 00:29:49] then I kind of tell them that I think most likely. Can I be wrong? Yes. But if I had to guess if things continue the way they’re going, I think that the baby will have, you know, two ventricles. Some people don’t like to do that and make any promises. Like, we don’t know.
Dr. Fox: Meaning they don’t like to predict?
Dr. Geiger: Right. And I’ve come across it. Like, we really will just have to see after the baby’s born.
Dr. Fox: Do you think that’s a function of experience or a function of personality? Because I would think that with more experience, you’re more comfortable making predictions because you’ve seen it more times versus if you’re just getting it from a textbook or your training, which is a few years, you’re less comfortable with that type of statement or prediction.
Dr. Geiger: That’s what I thought because, for myself, I would say that. I’ve become a little bit…You know, I have experience. You know, you read some papers on it. But I have to say research in fetal definitely has a lot of work and fetal cardiology has a lot of work, and it’s why there’s an effort to make more multicenter studies because these heart defects are relatively rare. One center may only have, like, one or two of these a year. So to compile the data in the same, sort of, treatment era is really difficult. But, you know, you do have this information and you have what’s happened in the past with you and your other patients, and so I try to best predict. But I don’t know. I mean, I’ve also seen quite senior people not really like to…not to commit because they don’t wanna make any promises they can’t keep, which I understand that too.
I mean, I always say if there’s a good chance either way, I describe both scenarios. Obviously, you know, usually one is better than the other but not necessarily. And, you know, if I have some information, either positive or not positive, I’m going to give it. I want to try to have the family be as prepared as possible. If I feel like the baby has a really good chance of not making it through the first surgery, you know, I will say that because that’s sort of realistic. And from there, it goes on. I mean, I would say that’s usually the first visit. If someone is critical lesion and the prognosis is not good but no matter what they’re continuing the pregnancy, and, you know, they’re gonna be hopeful then I’m not going to take that away each time. So, you know, at subsequent visits, I’m not going to say, “Again, your baby only has…” You know, I will…you know, “We’re gonna do our best.”
Dr. Fox: Because there’s no upside. There’s no point.
Dr. Geiger: Right. There’s no point. They’re continuing. We’re still gonna do our best. We’re gonna do everything possible to make sure the baby’s in best condition as possible. So I think there’s a big difference between that first visit if they’re people that are gonna try and make it to the end, you have to assess. You know, sometimes it’s like a taboo topic to some people to bring up termination, but that’s something that as long as it’s being offered in the state, we are going to say that is something that some people will do for severe or even medium, you know, heart defects and it’s a very personal decision and we have to offer it. And I think once the family has made the decision then we don’t bring it up again.
Dr. Fox: Yeah. I would say that over the years in my practice, just by doing it for more time, I’ve definitely learned more in terms of the knowledge base, right? You continue to learn every day, every week. But I would say my learning and how to talk to people has been far more than my learning of the actual conditions. Like, my understanding of, you know, birth defects on ultrasound is greater than it was 10 years ago, but my understanding of how to talk to people about it is infinitely greater compared to that. And I think that it is such a difficult thing to do because, on the one hand, you wanna be realistic, right? You wanna tell them facts. Like, that’s your job, right? You’re a professional. They’re coming to you for information, for knowledge, for experience. And so you’re not trying to sugarcoat a bad thing and you’re not trying to, you know, make something into…you know, just focus on the negative. You’re trying to be realistic, but it’s hard to do because also you have to react to how they’re reacting, right?
So if you mentioned that there might be something bad and they break down and it’s horrible, your inclination is to say, “No, no, no, it’s not so bad.” Right? And then you might be sugarcoating it. On the flip side, if you tell someone something and it’s pretty clear they don’t get that there’s a risk here, you don’t wanna just beat them down and say, “No, it’s gonna be bad. It could be bad.” And so you have to really…People say it’s an art and it’s sort of a cliche, but it’s true. It’s really an art and different people do it differently and some are better at it than others. And it’s also very hard because we don’t get training, other than just being thrown into a room and being told when you’re a resident or a fellow you gotta talk to someone about this.
Dr. Geiger: Or watch how this person does it.
Dr. Fox: Yeah. It’s hard to do formal training, and it’s just hard and it’s something that takes experience. I know this is something you think about a lot and you’ve been doing some research on as well. So tell us about that aspect of it, just the counseling component of this whole field.
Dr. Geiger: Right. So I mean, one thing…So two separate issues on that. So one is I was lucky enough to be involved in a study with some people who are in psychology and psychiatry about the trauma that a family…you know, just like the grief, say, of a normal pregnancy. And things that you say and how you behave actually can impact the rest of the pregnancy, and we know stress during pregnancy is not good actually for neurodevelopmental outcomes. There’s some evidence about that, maternal cortisol levels and things like that. So traumatizing the family is not the way to go, but sometimes you can’t help it.
And so one term that I recently became aware of is something called trauma-informed care where you are aware that you’re about to inflict trauma on this family, and it doesn’t mean you’re not going to no matter what if you hear…you can’t sugarcoat is the point. You have to tell them that there’s a heart defect. But if you, sort of, have it in the back of your mind that this is going to be a pivotal moment for you, it’s just another day at work. But for the patient, this is like a day they will never forget and some people mark time before and after they met you as big changes in their life. Their whole life changed after this day. So just being aware of how you speak to the family, the words you use, some people, you know, eye contact, empathizing with the family. This is a difficult situation, reiterating that it was nothing that they did that caused this. I mean, there’s a lot of guilt associated also, especially with congenital heart disease, but I imagine other defects. Any birth defects I think moms tend to feel responsible in some way. And so reassuring the family this is not anything they did.
So just being aware, even if you don’t have so much training in psychiatry or psychology, that this is gonna be, you know, potentially a traumatic event for this family. And also, it can impact how the family bonds with the child, so this actually could impact the child after birth. Because if a family was so traumatized by this that they never…Some people don’t bond well with a child or just anxiety. Having anxious parents, you know, does impact the child’s quality of life and how they’re raised, or being treated like they, you know, are in a glass box. So there’s different things in terms of like how you present this to the family.
As you mentioned, training, one of my former fellows, [inaudible 00:36:32] and I are looking at that and we just surveyed cardiologists, although other people like MFMs counsel too. We’re never trained in terms of how to break bad news really, except maybe in the last 10 years if you went through medical school, I think there’s probably more courses than we had about how to break bad news. But usually, it’s in the setting of a terminal illness, cancers, you know, one of the major things that I think if you’re in oncology that’s something you definitely have training in how to break bad news to some extent. But in cardiology, it’s not exactly, you know, terminal. It’s something that’s gonna take a lot of work. But, you know, it’s not this exact same thing as palliative care in all cases. Sometimes it is. So that aspect of training, we really haven’t had.
So we’re trained, initially at least, is to make the right diagnosis, to understand the physiology, and, to some extent, how to explain the physiology. But we’re not taught how to talk about these things and what the best way to do it is, and that’s something that, you know, as I mentioned, I’m still working on. There are still sometimes aspects of like, “Oh, I don’t think that went…” You know, I didn’t really feel like I conveyed everything to that family. I’ll call them back sometimes and say like, you know, “Do you have any questions?” I often do that after the initial meeting. Two days later, I might call them and just ask them if they have additional questions that they didn’t ask or anything I can clarify or I didn’t explain clearly enough, because it is a lot to explain in one session. Usually, we have like one hour. And it’s something that cardiologists are just now I think recognizing we need to have more training in.
Most people, just as most things in medicine, you watch your attending physician do it and then you try it yourself, you know, see one, teach one, do one…or do one, teach one. And it depends who you are watching, and it’s changed. So there’s people who are very senior who do it the same way. And there’s a huge variation we found in our survey of who talks about other things. So everyone talks about what the diagnosis is but not everyone discusses the neurodevelopmental outcomes we found out. Maybe they do it but they weren’t taught how to do it. I wasn’t taught how to do it actually. I think when I was graduating fellowship, you know, a while ago, those things were just becoming well known or starting to become known about the neurodevelopmental associations, so we didn’t really…we weren’t taught on that. But also, the genetic associations, not everyone mentions those. Not everyone mentions the possibility of termination or comfort care, and not everyone brings up extracardiac anomalies that may be associated with this, but you may not detect them prenatally. Like, they may…you know, a kidney problem or a brain problem that we may not see prenatally. So there’s a huge…So those are the things that are sort of recommended to discuss that are not just the heart disease but not everyone discusses them and it’s sort of up to who you are and what you remember to do that day.
So we start to now…we’re trying to make a checklist of the things that need to be discussed, and you try to get through all of them. You may not. You may miss one thing and call them back later. But, you know, I have my nurse practitioner sitting with me and so I ask like, “Is there anything else I’m forgetting to talk about?” This is gonna be a very emotional meeting and you get sidetracked because they ask…you know, it’s fine, they ask questions out of order of what I was planning on talking about. They wanna know about how they do in school after I just discussed the anatomy and so we go, you know, from topic to topic. So just to regroup, I think it is a good idea to have sort of a checklist in your mind or actually on paper of the things that you wanna talk about. But yes, that is something that for sure needs work. And I think in the future we’re, you know, hoping that this gets more attention and there’s more unified teaching in fellowship because this is something that I think as an attending after fellowship in the first five years, you know, I worked on a lot.
Dr. Fox: Yeah. And it’s hard because not only is it something we’re not trained on, but like anything, different people have different aptitude for it. Some people are very good at talking about uncertainty and talking to people who are in grief and denial, like all these things, you know, denial, anger, bargaining, it comes up and some people are very comfortable in that room talking to people going through a trauma, and other people are just not. It’s not their thing, but you have to do it. And so just like, you know, if you’re gonna be a surgeon, you know, and you have a…you know, you’re not so good at throwing a suture, well, you better learn how to throw a suture. Like, it’s just something you have to do, but not everyone picks it up as easily. So when we train surgeons, we look at them and we say, “All right, this person is very good at this and needs help with something else.” And another person might be the exact opposite.
But, you know, we’re just talking about scratching the surface, just the things that need to be talked about. But then how do you get someone who’s not so good at that, or someone who’s not so great at eye contact, or someone who’s maybe a little bit more shy or more just whatever, that’s just not their thing, yhey’re not people-people, and they’re really good at making the diagnosis and they’re really good technically. And it’s challenging, like anything in training, and it’s hard.
Dr. Geiger: That’s also the question we asked in our study. We asked, you know, were you taught techniques on how to talk to families or how to be empathetic and things like that? And most were like, “No.” Some people have gotten feedback. Like, you need to be…I don’t know, make more eye contact, but that was the minority. So the goal would be that you have some kind of curriculum for trainees that you actually…it’s uncomfortable, but you actually get told these are the things that are important too. So, you know, a few things like empathy, you know, just acknowledging that this is difficult. I think that’s something that…[inaudible 00:41:45] is someone who’s at Stanford told me that actually there are some studies that say just acknowledging that it’s difficult actually helped families retain more of what you told them.
Dr. Fox: Validating.
Dr. Geiger: Yes. Because they sort of like, “Okay, you know, I feel comfortable with this so I’m gonna start paying attention again,” to what the anatomy is or whatever. So I think if you’re just feeling disconnected from the person, like this person is saying words I don’t know…So that’s the other thing, using too many medical terms and it’s going overhead and it’s just like, you know, you’re not hearing any…just going over my head at that point, they’re not gonna notice. So I think stopping and assessing, you know, do you wanna keep going? Do you wanna take a break? I have to say sometimes I don’t do it. Sometimes, you know, I feel like this parent has this question. I get to that and we kind of, you know, get through all of it and they need a couple hours and we have to regroup in a week or so. But that is something that I think does need some kind of formal because, as you said, it’s not uniform. Some people are not good at it but that’s something that they have to have at least a minimum aptitude at explaining, yeah.
Dr. Fox: Yeah, some proficiency. I think we were lucky in our medical school, Mount Sinai. They were a little bit ahead of the curve with these types of things. I know that I did an elective rotation in palliative care and I learned so much during, you know, those two weeks. And we already, back then, you’re talking 150 years ago when we were in medical school, we already had the Morchand Center where they brought in, sort of, like, actor type patients and we would practice talking to them so it simulated patients. I mean, they’re not mannequins. They’re humans, but they’re simulating, meaning they’re not actually sick, but they were pretending to be sick.
Dr. Geiger: Like in the “Seinfeld” episode.
Dr. Fox: Yes. And so we were…you know, we had to train how to talk to them. And in our fellowship, it wasn’t…Every fellowship has their own, sort of, set of training, but I know that now, at least for MFM, there is some curriculum in terms of like delivering bad news and how to do these things, and it is something that’s being pushed in a good way, but it’s just difficult because…And, you know, also who are the people teaching it? Maybe they’re not very good at it either, you know. And so it’s hard.
Dr. Geiger: So the other thing is actually getting patient feedback. So I know there are some people who, you know, in psychiatry and psychology, and some of them in different areas like neonatology or oncology who have…And there’s actually a couple of studies in cardiology on, like, what was helpful and what wasn’t helpful.
Dr. Fox: We find out on Yelp very quickly.
Dr. Geiger: Yeah.
Dr. Fox: Very, very quickly we’ll find out of Google reviews how we did, within minutes usually.
Dr. Geiger: Yes. So yeah, I mean, there’s, like, you know, specific things that I think, “Well, I guess I didn’t think about that, but yeah, that’s…” Like, there was one paper out of L.A. that the parents really didn’t like it, or felt it was more severe if you used the term “rare.” And it was like, I didn’t think that that held such a negative or positive connotation, rare. But people think of rare as, “Oh, they’re not gonna survive.” To me, rare is just it doesn’t happen often. So sometimes they do great and they have something rare.
Dr. Fox: Switch to uncommon or something.
Dr. Geiger: Yeah. I mean, I don’t know. But sometimes that gets interpreted the word use…For example, the word “rare” as terminal. But to us, it’s not. It’s just we don’t see it a lot and maybe you may be fine. So I didn’t know that that was so bad. And, you know, eye contact. Some people didn’t like that people…This is a heart, right? So some people didn’t like that termination was brought up a lot. Some people thought that they should’ve been offered it and they weren’t offered…Like, you know, it’s almost hard to please everybody, right? You know, different social backgrounds and educational backgrounds. But I think there is some, you know, need to get feedback from patients who’ve been through this so that we can, you know, help develop a curriculum.
Dr. Fox: Totally agree. I think that some of the…Like you said, not everyone needs the same thing. I do think the eye contact, not using a lot of medical terminology is very helpful. I think that giving people an opportunity to either come back or on a phone call or in person, you know, because they have to process this. They have to google it. They gotta ask people. Like, when they have to sort of go through that and then come back with more questions. Also, at the end, not just leaving time for questions but how you word it. For example, if you say to someone, “Do you have any questions?” some people won’t say yes. But if you say to them, “What questions do you have?” that’s different because the assumption in the first is, “Well, why would you need any questions? I explained it great.” Whereas, the second one is, “Clearly you’re gonna have questions. Right? Because everyone has questions.” You say something like, “All right, everyone has questions. What are the questions you have?” That opens up so it’s more inviting for questions. It’s just these real subtle things that you wouldn’t think of necessarily but that’s the stuff that would need to be trained and practiced and, you know, spoken about, and like you said, you get feedback on it.
Miwa, this is really great stuff. And, obviously, it’s lovely to see you because it’s always nice to see you. We’ve known each other a long time. But also, just it has been so cool to have this relationship, you know, back and forth with patients and with research and with academics for all these years. And we always talk about how much we appreciate having you guys around because it’s just awesome and for our patients. But this is also just from the podcast level is so important because so many people are gonna be faced with a diagnosis or a possible diagnosis and they don’t know where to turn, and it’s just another way to get more information on just how we approach these situations just as a very, very, sort of, floor base so people can then address their individual circumstances.
Dr. Geiger: Yeah. I mean, one other thing. Parents do want support. And like I said, I may say, “Oh, the heart is corrected.” But if the child has behavioral issues at home or a genetic diagnosis in addition, I mean, I think it’s helpful to offer…And we offer mentorship from families that have a child with a similar diagnosis or same diagnosis to pregnant women that just got diagnosed so they can talk parent to parent. Because I may see these patients in my office once a year, but I don’t live with them, so, you know, I have to admit that I don’t know what it’s like on a daily basis. So I think that’s important to offer some areas of support. So sometimes we do offer some support group. We do have a support group for our fetal patients to meet with other families and one on one on the phone, but there’s also, obviously, like, groups, you know, different various congenital heart groups. There’s one in New York, there’s one more national, and there’s Facebook groups. So that I think also helps families cope after a new diagnosis.
Dr. Fox: Thanks for coming in, Miwa. Thanks for being on the podcast.
Dr. Geiger: Thanks, Natey.
Dr. Fox: We’re gonna obviously do this again and we’ll talk about maybe specific diagnoses to really, you know, do a deep dive into one of them so if parents have one of those, they’ll get to hear from the expert.
Dr. Geiger: All right. Sounds good. Thank you so much.
Dr. Fox: Thank you for listening to the “Healthful Woman” podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com. That’s healthfulwoman.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at hw@healthfulwoman.com. Have a great day.
The information discussed in “Healthful Woman” is intended for educational uses only. It does not replace medical care from your physician. “Healthful Woman” is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.