Adult Congenital Heart Disease in Pregnancy: Expert Q&A
November 12, 2021
Your heart, just like your pregnancy, is unique. We also know that pregnancy can put a lot of stress on your heart, especially if you have a pre-existing cardiovascular disease-- in particular, congenital heart disease. While pregnant, your body goes through complex changes that can make many existing heart conditions worse, sometimes leading to problems throughout pregnancy and especially during delivery.
Coming up next, our experts will discuss how to reduce the risks for you and your baby and answer your questions. That's coming up right now on At the Forefront Live.
And we want to remind our viewers that today's program is not designed to take the place of a visit with your physician. Let's start off with having each of you introduce yourselves and tell us a little bit about what you do here at UChicago Medicine. And Dr. Earing, you're actually at the desk with me. We are practicing social distancing again. So we'll start with you.
My name is Dr. Michael Earing. I'm an adult and pediatric trained cardiologist. I run the adult congenital heart program. Also do a couple other things in my free time. I run the Marfan Arotopothy program, and I'm the chief of cardiology for all the congenital heart disease impedes cardiology.
I imagine dealing with children versus adults in heart issues, two very different things, but we'll get more into that. But it sounds fascinating.
So Dr. Perdigao-- I'm sorry, we talked about that beforehand. And I was going to really mess up your name and I did it anyway. Dr. Perdigao, I apologize. Tell us a little bit about what you do here at UChicago Medicine.
So I'm Joana Lopes Perdigao. I'm one of the maternal-fetal medicine specialists here at the University of Chicago, which essentially means a high-risk obstetrician. So we take particular care of anybody that has any high-risk disease or any babies that have any high-risk disease.
We were talking before the show, and I thought it was interesting because we were talking about moms that face congenital heart issues. And it could be particularly challenging during pregnancy because there is a lot of stress that happens. Let's just talk about adult congenital heart disease in general first, and kind of define that for our viewing audience. What exactly do you mean by that?
Yeah, no. Great. I think it's really important to set the definition. So congenital heart disease is the most common birth defect. It's more common than anything else that you will actually see-- cleft lip, cleft palate, cystic fibrosis. So one out of every 100 babies born will have a heart defect.
And in the past, only about 20% of those children would survive to adulthood. Today, with medical and surgical advances over the last 60 years, now 90% survived to adulthood. And so now we have a group of children that had heart surgery that are now adults, and they have some challenges. Most do really well, but there's challenges.
As you have those women now entering that childbearing age, or being able to become married and have children of their own, we have these new challenges that we're doing. And most do well, but they do have some special needs, special kind of things that have to be watched and observed.
So of these adults that have this situation that's happening to them or that they exist with, is it usually caught when they're young or is that something that they discover later in life?
We have a really robust maternal fetal program here. We have really great fetal echocardiographers, so most of the time we work really closely with the maternal-fetal medicine.
And most heart defects are identified now even before they're born. And so it's been really revolutionized in the care. Because you can imagine if we know that child has a defect, we're prepared for that. So when that mom delivers, we already have had a plan and counseling.
And this is one of the things that Dr. Perdigao and her team do a great job. So it's a partnership, Tim. It really is. And that's something we've been doing here for a very long time at UChicago.
Dr. Perdigao, I'm kind of curious because I would imagine, to Dr. Earing's point, you probably have a pretty good idea with these moms that if they have this situation or not. But occasionally, I'm sure you probably get surprised by maybe a mom who was not diagnosed. And walk us through that process. First of all, how do you how do you even know that that's happening if they haven't already been diagnosed? And what do you do at that point?
So a lot of times these moms will present to us with a couple significant symptoms-- normally cardiac symptoms, so palpitations, feeling more short of breath than they usually should be for their stage in pregnancy, or just chest pain. And normally, we go through the entire process of doing an EKG, an echo cardiogram, and throughout their echo cardiogram, sometimes we can find certain lesions. And that's when I involved Dr. Earing and his team.
So Dr. Perdigao, pregnancy, we were talking about that just moment ago, is a pretty stressful time for a mom's body, and childbirth in particular. So what happens as far as the stressors on the heart, and what can a mom expect to experience?
So the heart goes through a variety of changes in pregnancy. The cardiovascular system goes through a variety of changes in pregnancy. But the biggest one is probably that you have about 50% more of blood volume than you initially did at the beginning of pregnancy by essentially the middle or beginning of your third trimester.
So if you can imagine, it's like a pump that all of a sudden has twice the amount of work to do, so that can be pretty stressful on the heart. And most women do totally fine with it, but there are some women that need a little bit more help and a little bit more attention.
Dr. Earing, you alluded to the fact that we've got this partnership here at UChicago Medicine with obviously you and Dr. Perdigao, but there's a whole team that works. And that's something I always like to point out on these programs, because I think it's this team-based approach to care here that really makes a difference. Can you talk to us a little bit about that and how that is so special and so helpful for most?
Yeah, no, it's a really important part of what we do every day, Tim, so I appreciate you asking. When you look at women that survive with heart defects, most of them, as Dr. Perdigao said, doing well.
But sometimes, you can have a leaky valve, or a tight valve, or the function of the heart may by not normal. And with those extra changes that happen during pregnancy, they can have issues. So each woman that we have that we evaluate, we work as a multidisciplinary team to say, OK, here are the risks that they could have based on their specific heart defect, and what they have going on at the time. And then we're able to tailor how we follow them and how we take care of them as a team. So that's maternal-fetal medicine, cardiology, but also anesthesia. The nurses are involved.
Genetics-- if you have a heart defect, you have a higher risk of having a child with a defect. Slightly higher, but it's one of those aspects so we talk about all those things. And it's individual tailored care for each of those women, based on how they're doing. And that's the really secret part of all of this, is that each woman is a little different, has a different history, but we're able to take that together and tailor it for them.
And communication-- Dr. Perdigao, I want you to talk a little bit about this. Communication with the mom and the family is so critical, and I know that's something you very much believe in. Talk to us how that works and how involved is the mom and the family throughout the stages.
I mean, they're involved in every step, I think, from the very first prenatal care visit. We take the time to walk and talk everything through. And then Dr. Earing will do the same. And what then we, Dr. Earing and my team, essentially, just talk even behind the scenes. We have monthly meetings. We also email each other a lot, or even text in regards to certain patients and what's going on.
But in terms of communicating with the patient, it's like we try to be as honest and as open as possible. So I call them if need be, bring them back, if need be, more often. So it's open ended. They tell me what they need from me, and I tell them what I need from them.
So the patient's really involved in building that plan.
Yes, for sure.
I think that's just so important. We do want to remind our viewers that we will take your questions. So if you want to text them-- or excuse me, type them into the comment section. So used to texting. Type them into the comment section. We'll get to those, as many as possible, throughout the half hour.
We do have a viewer question. We're going to get to that, and then we're going to do a sound bite with a patient, too, so that'll be neat. We'll do that here in just a moment.
First, a viewer question. If I have a congenital heart disease, will my baby have health problems? I don't know which one of you might want to take that one.
So one out of every 100 baby born will have a heart defect, and that's in general population. If mom has a heart defect, the risk goes up to three to five out of 100, so slightly higher if you have it. But even if dad had a heart defect, the risk does go up a little bit to about 3% to 4%. So those are the numbers that we do.
But that's really important because we do something called a fetal echo, and we typically look at the baby's heart before the baby's even born just like I kind of mentioned earlier. And that's a huge part of it.
So the risk, if you're a glass half empty, half full kind of person, the risk is slightly higher but it's not that much higher. But it's really important that we have that counseling and that evaluation. And more importantly, by experienced people because sometimes these things can be subtle, and picking those things up can be sometimes a challenge for other kind of specialties and physicians.
Absolutely important to have that knowledge. So let's go ahead and play the first sound bite from Katie John, and this is when she's going to talk to us about having congenital heart disease. And at first, I don't think she quite believed that it would be the issue that it was. Let's play that sound bite.
I was born with a congenital heart disease. It's called Sean's Complex. So there's a couple abnormalities in my heart, and I've had this since I was born. I've had two heart surgeries from it. And really, I've always lived a normal, regular life. My two prior pregnancies, I had no troubles at all really. This third one, I had trouble. I think it was because I was older, due to my age. And then also, the wear and tear of my other two pregnancies just really took a toll on my heart. So this experience wasn't like the other two experiences I've had being pregnant.
And some of the news that I was given by the cardiologist, I just really didn't expect to have to go down that road of being off work for an amount of time, having all these symptoms of shortness of breath, and he told me. He's like, this is what's going to probably happen the farther you progress. And in my head, I was kind of like, I've done this twice. I've never experienced this. But he was right, the third one I was just completely-- and I was scared. I was scared. I have two other children. I have a family. I work. I didn't know what the unexpected was, and it was definitely a surreal situation for me.
So Dr. Perdigao, if you have this congenital heart disease or defect, how much does it increase the risk during pregnancy, and what potentially can happen?
Well, that would be very dependent on what the heart defect is. There are some that are very low risk, and you essentially have pretty much a pretty normal pregnancy, up to the point that there are some that I will be very honest and I will tell you very frankly, I don't think you should be pregnant or it's going to be extremely, extremely high-risk to you and your baby to stay pregnant. But most women do fall somewhere in between those two extremes, of course.
Dr. Earing, are there warning signs that people should look for?
Yeah, so another way to ask that question, Tim, is it's always better to have that evaluation before you get pregnant. And we can then sit there and really risk stratify what the risks would be, but not just for the mom, but also for the fetus. So we really risk stratify for the maternal risk and the fetal risk. And then we can come up with a plan together.
Now, that doesn't always happen, Tim, as you know. And so in those situations, then we also try to counsel as soon as we can to try to come up with a plan. You know, I don't always like to be right in these situations, so but I always think it's really important that we plan for what could happen and we have a really good plan for it.
And you know, Joana's team and ours work really good together. We have a monthly meeting, and we talk about all these things. So no matter what time of day, if it's on the weekend or at night, our team are all aligned, and we're ready to take care of those problems. And I'm really happy when they don't happen. But you always have to have that plan.
So Dr. Perdigao, I was kind of curious when we saw Katie's sound byte. It's almost like she didn't quite believe it at first.
And it took a little convincing.
She didn't. And she thought I was a little bit crazy, I think, when I was like, I really want you to go see Dr. Earing.
Well, and I imagine that happens, though, particularly for a mom who has had a kid already, or two in her case. And you think, I've done this. I'm a pro at it. This is not going to be an issue. But it's great that we are checking this out.
Yeah, for sure. I mean, she was already symptomatic when I first saw Katie very early in her pregnancy. So I was more than happy to send her over to Dr. Earing's office as fast as I could to get his input and to do an echo. And then I just went on from there.
So yeah, definitely every single pregnancy can be different. And we've had a couple of patients even, I would say, that they are presenting slightly differently in this current pregnancy than they did in prior pregnancies.
Yeah, and I would imagine that would be just kind of an easy thing as a mom to think, well, I'm going to be fine. It's good that you do what you do.
Another question from a viewer, and this is kind of a tough one. I'm going to throw this one to you, Dr. Earing. This is from Eashia, I believe. What are the plans for the Chicago and Children's Health Alliance relative to the [? CHD? ?]
Yeah. So we are really working-- congenital heart disease has been a really long tradition. So there's over a million adults with congenital living in the United States. And if you can do the math, there's 2.8 million in Chicago, another three million surrounding. So the number of adult congenital patients in Chicago is huge.
One of our goals is to come together with multiple institutions across the city and the region to provide this specialty care for adults with congenital heart disease. And so the Chicago Health Alliance is a way of bringing a lot of these children's centers, where most of these children start, bringing them together and having that expertise care. And so that's one of the major plans.
And with this many adult congenitals, we're really in a city this size. We really, really need this. And so in partnership with Dr. Perdigao's team, this is part of that adult congenital care. It's a group of individuals that are taking care of all the needs of these adults that are survived with heart disease. It's an incredible story if you look at it. To go from 20% survival to now 90% in 60 years, it's just a great health care story. It's amazing.
New problems, and this is where Joana helps us, but that's a great thing to be able to help families have their own families and get through this. But have a healthy mom and a healthy baby? That's what it's all about.
That's fantastic. So let's play Katie's byte number two, John, and she's going to talk a little bit about her care. And we'll listen to that and then have some comments from the two of you afterwards.
So with Dr. Earing, I saw him frequently. He wanted to see me about every four to six weeks, depending on how bad my symptoms would go as I progressed during the pregnancy. He always discussed my progress or my problems with Dr. Perdigao, so I feel like the combined care together really helped me with my pregnancy issues and my heart disease issues. And the two of them both had devised a combined plan on how to treat my heart issues going in the way with my shortness of breath, and then I was also having a lot of edema.
With a lot of heart patients, they always ask you, how do you feel? If you feel like you could do this, then I'm with you. But if you feel like I'm walking down the street and I can't breathe and you're having problems, and that's not your usual MO, then we're going to have to relook at this.
So it was nice that I was always being put into the equation as far as always being asked, how do you feel? How do you feel about going a little bit stronger on your medication? And does this help you with as far as being able to walk up the stairs, being able just to even sit comfortably without having shortness of breath?
So she talks about two things there that I think are really important. I'd like both of you to comment on if we can. First of all, that team approach, which again, we talked about but I think it's critical. And then also just the communication with her throughout the situation. And Dr. Earing, I don't know if you want to start us off, then we'll go to Dr. Perdigao.
Sure. And I think it's crucial. One is that we communicate always as a team, but having the patient as the center of that care model is crucial. What is important to you, Tim, every day and what is important to me may be completely different for that patient. And so that individual ability to have them be the center, and what they need is really crucial. It's really important to make this a successful relationship. So she is an incredibly hard working woman that has a family, so being able to continue to do those things are crucial for her.
So Dr. Perdigao, again, it's complex though because you're juggling a lot of things here. You're talking to the mom. You're talking to Dr. Earing. You're talking to the other providers. And there's a lot going on here, but it's important.
It's absolutely crucial. I mean, without Dr. Earing's input, anesthesia's input, everybody else. Nursing and even L&D staff. I think we all came together and made a great plan, I believe, for Katie and her baby. But absolutely, teamwork is very crucial in cases like this.
So we have another question from a viewer. What does care like post pregnancy for mom and/or baby? And I guess it depends on whether or not the baby has the same situation or a similar situation.
So depending on what we're talking about, it's just a lot more closer follow up. I like to normally see them a lot more frequently than I would on another type of patient. And then Dr. Earing will see them as well. And I'll let Dr. Earing answer for his part.
Oh, sure. Because of the hemodynamic changes, so the amount of pumping 50% more blood, your heart rate goes up. After you deliver, what's supposed to happen, Tim, is that your heart's supposed to remodel and go back down to normal. If there's extra stress, though, sometimes the heart doesn't go back to normal. So we really follow them really carefully in that early postpartum period because there's a lot of changes going on. And so it's really crucial to follow them during that time as well.
And it really depends on what's going on-- tight valve, leaky valve, heart function. Those are all kind of tailored to how often we see them. But that early postpartum period is really important as well.
So if the baby has an issue, for example, a valve issue or something like that, which I would imagine you probably see fairly often. Is that something that you do a surgical intervention, or what do you do in a case like that?
Again, it really depends on what it is. So we have a very, very busy part of the Alliance. We have a very, very busy congenital heart program. We're one of the busiest in the Midwest, clearly equal to the busiest program in the city. And so when you have a heart defect in your baby, if it's identified by fetal, we start discussing that right away so the family knows going in these are the options, these are things. But even then, we're still not able to make that final decision until the baby's here. But then, often, that baby will need to have intervention. And after delivery, may have to have a special kind of things done.
The key though, is that the family is part of that relationship and that discussion as well. So they're crucial to part of having those things and deciding that.
So it's interesting, and I'm at risk of this being kind of a silly question. When you perform a surgical intervention for a baby versus an adult, there's obviously a large difference there. How much more difficult is that to do the procedure?
Yeah. So neonatal heart surgery is just one of these-- it is one of those huge advances that we've had. You need to have really board certified congenital heart surgeons. We're fortunate to have three board certified congenital heart surgeons that run our program here. You have to have that experience. So all of the data will always tell you that if you have an experienced center of taking care of them, the outcomes are always better. And like I said, that's one of the reasons why we are one of the busiest in the Midwest. Those outcomes are outstanding.
Makes a big difference, doesn't it?
It does, huge.
So Dr. Perdigao, I'm curious. If the mother is on heart medications, can that impact the fetus?
Most of the time, they can be on a beta blocker, which is a medication that can slow your heart rate down a little bit. And then there's other type of medications that can be on. I normally tell them that whatever is good for their heart is going to be great for their pregnancy. If mom is healthy, baby is healthy. But beta blockers sometimes can potentially affect fetal growth. And because of that, we do monitor them pretty closely, especially in the third trimester with serial growth ultrasounds. But most of the time, these are completely safe medications for moms and babies.
Great. So John, I think we're going to go with the third sound byte from Katie now, and she's going to talk a little bit about post care. And I think she has some nice things to say about our doctors potentially.
I feel great. I feel like my normal self. Baby is doing great. She's six months old now, and she is thriving. I still see my cardiologist, Dr. Earing, and he's still following me, making sure that everything else is still going smoothly, that my heart is still going back to the normal baseline that I'm used to. But as of right now, we're doing great.
I just want to say that Dr. Perdigao and Dr. Earing are amazing doctors. They helped me throughout my whole entire pregnancy. I never felt alone. Every time I called, they were always there. They always called me back promptly. They just had such great bedside manner. I mean, I can't speak anything much more than that. They are amazing.
And that's nice. And I will say Katie's watching us right now. She just sent a little message, so she is watching. So thank you, Katie, for agreeing to do an interview.
Thank you very much.
That was great, and I'm glad your baby's doing well, too. That's neat.
No, it was great to see her. It's great to see her.
So this is interesting, though. John, I like how you cut up the soundbites because we kind of went before, during, and after and it really showed the progression. And she kind of talked about how she felt throughout the entire thing. And I would imagine that's probably not unusual for a mother who is experiencing a situation like that. So it was neat to see that.
So when we talk about post care, and I know we spoke a little bit about that. And Dr. Earing, I'm kind of curious from your standpoint. If you do diagnose a child, or you see a child that might have a heart defect after birth, I know sometimes there are things you would do fairly quickly. Are there times when you would just wait and say, hey, let's just see how things go and maybe down the road, we could do something?
Yeah, those are all the tailored plans. You know, it really depends on what the heart defect is in how we manage it. There are some defects that you definitely can wait. There's some defects that aren't very serious that may actually close on their own or do well.
But then there's the ones that are very serious. And those are the plans, you know, being able to have that discussion.
You can imagine if you have your own children, Tim, it's an incredible adventure, right? You're excited. You see all the things they're going to do. But then they get told that the child has a heart defect, it's a really an overwhelming type of moment. And so having those discussions before helps everybody prepare for what can come. And we're right most of the time, not always. But it's really, really important.
And like I said, today, a child born with a heart defect, no matter how bad it is, 90% of them are going to survive to adulthood. That's what I really want everybody to focus on. Yes, there's some bumps in the road, but I've had some incredible success in a really busy congenital heart center program.
The reason I ask that-- I have a family member who was born with a heart issue and eventually had a valve replacement but it was quite a bit later in life.
It worked out well for him.
Absolutely. Absolutely. I'm glad to hear that.
Yeah. So Dr. Perdigao, are there any kind of closing thoughts that you would give a mom that may be facing something like this because I imagine it's a scary situation. You know, pregnancy in general is very stressful, obviously, for the entire family, but particularly when you add something like this in it's got to be a little scary.
Yeah. I mean, we fully understand how scary it can be. It's an unknown, right? Especially if it's your first pregnancy. I would say preconception. Come and see us even when you're thinking about potentially getting pregnant. We can talk you through it. We can create a plan for you, and we go on from there. And just because you're seeing us does not mean that you have to deliver with us. A lot of women can deliver with their own obstetrician at home. But if you do need to deliver with us, we'll take great care of you.
Dr. Earing, any closing thoughts?
I think it's really important. So what I always tell everybody-- if you or somebody you know has a heart defect, chances are you're going to do great. But it's really, really important that you get regular follow up in a center experience. We're taking care of adults with congenital heart disease, and I bet you're going to do well. But I want to make sure you're doing well long term. And that's where the team and the adult congenital program comes in.
And especially if you're a woman considering starting your family, I'd love to see you before so we can have those conversations and then work with Dr. Perdigao's team to really have a great individual plan for you.
Fantastic. Well, we are out of time. Special thanks to our physicians for being with us today, and a big thank you to those of you who watched and participated in our program. Please remember to check out our Facebook page for a schedule of programs coming up in the future. And to make an appointment, go online, UChicagoMedicine.org or call 888-824-0200. Thanks again for being with us today, and I hope everyone has a great weekend.
Pregnancy can put a lot of stress on your heart, especially if you have a preexisting cardiovascular condition. Cardiologist Michael Earing, MD, and maternal-fetal medicine specialist Joana Lopes Perdigao, MD, work together to provide the highest level of care for pregnant patients with adult congenital heart disease (ACHD).
If you have ACHD, learn how our expert team can help reduce health risks for you and your baby during pregnancy.
Read More from Our Experts
Michael Earing, MD
Michael Earing, MD, specializes in adult congenital heart disease, Marfan Syndrome, familial aortic aneurysms, pulmonary hypertension and pediatric cardiology. Dr. Earing has a keen understanding of the complex care needed for long-term success, and he is an expert in navigating the challenges pediatric patients face when transitioning to adulthood with congenital heart disease.Learn more about Dr. Earing
Joana Lopes Perdigao, MD
Maternal-fetal medicine specialist Joana Lopes Perdigao, MD, provides high-risk obstetrical care for patients with congenital heart disease and other conditions.
Learn more about Dr. Perdigao
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