Having the Heart of a Child…as an Adult?

This is Weekly Dose of Wellness, brought to you by MemorialCare Health System. Here's Deborah Howell.

Deborah Howell (Host): Hello and welcome to the show. I'm Deborah Howell and today's guest is Dr. Shaun Setty, Medical Director, Pediatric and Adult Congenital Cardiac Surgery Pediatric Heart Center, Miller Children's and Women's Hospital in Long Beach. Welcome, Dr. Setty.

Shaun Setty, MD: Thank you so much for having me.

Deborah Howell (Host): So many adults are going about their daily lives and don't even know they're suffering from a congenital heart defect. As a matter of fact, there are more than 750 adults living with a congenital heart defect in the U.S. alone. This could be because adults with congenital heart disease may not be getting proper follow-up care after correctional surgery they had when they were a child, or they were misdiagnosed when they were younger because they never showed any symptoms. So Dr. Setty, my question to you is what is a congenital heart defect?

Shaun Setty, MD: A congenital heart defect is a structural problem of the heart that a patient is born with. So it can be holes between two chambers. It can be abnormal development of the heart chambers itself, of the valves, of any vessels connected with it. So anything having to do with a structural problem that the patient is born with, and that's the difference between congenital and some of the other things we think about, like acquired, in that you're born with this problem. It's not something you develop.

Deborah Howell (Host): And it is structural.

Shaun Setty, MD: Correct.

Deborah Howell (Host): Okay. How common is it in adults?

Shaun Setty, MD: Well, in terms of babies who are born with congenital heart disease, it's 8 out of 1,000 births. And so you can kind of transfer that information to that of adults. So if it's not picked up, then the adults who still have that, you'll see that. So it's just under 1% of people have a congenital heart defect.

Deborah Howell (Host): That's actually higher than I thought it might be.

Shaun Setty, MD: It's the highest congenital disorder, and I think that's why we hear about it so much.

Deborah Howell (Host): Okay. So what are some of the signs and symptoms of a congenital heart defect in an adult?

Shaun Setty, MD: In an adult, it all depends on the defect. But some of the things people can see, let's say they have a hole between two of their chambers, is it makes the heart work harder. And when the heart works harder, you can get symptoms of being overly fatigued, breathing really hard when you're active. Those are probably the two most common ones.

Deborah Howell (Host): And I suppose a lot of people confuse that with just getting older.

Shaun Setty, MD: Yeah, and there are so many other things you can see that would cause that too. You know, someone could have asthma or lung disease, and sometimes those things are mixed. And so definitely it's one of those things. But what I would say is if one treatment's not working, then maybe something else should be looked into.

Deborah Howell (Host): Sure. Now let's get into the common types of adult congenital cardiac defects.

Shaun Setty, MD: Sure. So I kind of, in my mind, separate these two. They're the ones where the patients have had a previous surgery and have gotten older and they either need something redone or they need something replaced. And because there's so many congenital heart defects, you really have to individualize it to the patient. So there's those patients who have a known congenital heart defect that was treated that may need more treatment. And then the other category where there's the new patients who maybe had more of a minor defect, have lived with it for their whole life, and because of time and the heart working a lot harder, they start to have symptoms when they're older, and those are picked up. And so some of those would be some of the more common, what we call septal defects, so holes between the atrium, called the atrial septal defect, between the ventricle, called a ventricular septal defect. Those are some of the more common ones.

Deborah Howell (Host): Okay. And what are the capabilities from Miller Children's Hospital? What do they have to treat adults with congenital heart defects these days?

Shaun Setty, MD: Well, I think we're unique in the way that we have the whole spectrum. We can treat a newborn baby all the way up to an adult because the two campuses are right next to each other. And so the nice thing about that is we're just not a children's hospital, but we're an adult hospital too. And so the same physicians that work with these pediatric-type patients can work with adult-type patients to kind of do the whole spectrum of congenital heart treatment.

Deborah Howell (Host): Okay. So if an adult had surgery to fix a congenital heart defect when they were younger, is it then fixed for life?

Shaun Setty, MD: So that depends on the actual defect. So some of the ones we talked about, the more common ones, the holes between chambers, usually when that's fixed, they're usually fixed for life. And then there's some of the more complicated defects where they will need additional surgeries as they get older.

Deborah Howell (Host): I see. Okay. So if you are falling into that later category and you do need other help later on in life, what should patients do to make sure their defect doesn't resurface?

Shaun Setty, MD: So I think the best thing to do is to have proper follow-up. And so the reason why adult congenital heart disease has come into the light so much recently is because a lot of these patients who were treated in the past have now progressed and gotten older. So there's a lot of patients. I mean, I think the latest numbers are closer to 1.5 million adults in the United States that are living with congenital heart disease. So it's very important to have proper follow-up. And I think that follow-up sometimes drops off between the change between the pediatricians and the adult doctors. And so one of the things they're doing nationally is they're actually starting a new medical board just for adult congenital heart disease. And that's going to be starting later on this year. And so there will be specialists who will be able to fill that gap. And I think that's the most important thing for these patients, wherever they are, is to make sure they have follow-up.

Deborah Howell (Host): Excellent. Okay. And are there things patients can do to make sure it doesn't resurface? I mean, in terms of lifestyle choices?

Shaun Setty, MD: Yeah. In terms of lifestyle choices, I don't think there's anything someone does to make themselves have a congenital heart defect. But I think if they have it, it's just following your physician's advice on what you should be doing, what you should be looking out for. Sometimes they need to be on certain medications that will help them. It's basically proper follow-up for their defect in close communication with their physician team.

Deborah Howell (Host): Sure. I don't know why I had this picture of the strongman at the circus lifting the 500-pound weights and thinking maybe you shouldn't be doing things like that.

Shaun Setty, MD: So, you know, I think with certain heart defects, they won't want you to do that. And because there's so many of these, I mean, there's hundreds of these, it's the job of the physician team to actually individualize the patient and say, okay, you know, maybe you don't have any restrictions, or no, maybe you can't do these few things based on what your heart is. And so that's why it's so hard to make generalizations. You really have to individualize it.

Deborah Howell (Host): And, you know, you have to really, it sounds so trite, but you have to listen to your body. If you're doing something and it's causing you pressure or, you know, to be in pain, chances are that's not such a great thing for you to be doing.

Shaun Setty, MD: Absolutely.

Deborah Howell (Host): Now, for our listeners who could be potentially living with a congenital heart defect, where can they go to learn more?

Shaun Setty, MD: They can definitely, you know, come to our heart center. We have the Miller Children's Heart Center, but that just because it's children's doesn't mean we don't deal with adults with congenital heart defects because that's what we specialize in. That's all we do. So, you know, the heart center number is 855-999-MCH1. And that will get you straight to our heart center, and they can definitely be connected with someone who can help them.

Deborah Howell (Host): Okay. And can you tell us a little bit about Miller Children's NICU?

Shaun Setty, MD: Absolutely. So we have a very large NICU, and a lot of our patients either have a diagnosis made shortly after birth or actually come in with a diagnosis of their baby having a congenital heart defect. And once those babies are born or once they find it out, then we can actually treat them appropriately. Some of those patients, probably about a quarter of them, will need surgery or some sort of intervention right away, and the other ones can wait a few months before they have a procedure performed.

Deborah Howell (Host): And you have nice facilities for the parents and the family to hang out?

Shaun Setty, MD: Yeah. So, you know, we have a beautiful Ronald McDonald house, which is probably about three or four years old. And it's a great resource that we have here for families. And it's the same as with the NICU. They have facilities and they have a brand new kind of Patient Family Waiting Center. And we're in the process of redoing our pediatric intensive care unit. And so that's going to be brand new here shortly, too. So I think in terms of facilities, I think they're top notch.

Deborah Howell (Host): Yeah. And better for patients in the future. And of course, for you as physicians as well.

Shaun Setty, MD: Correct. And the families.

Deborah Howell (Host): Yes. Well, thank you so much for taking time out of your day. I hate that we're out of time, but we are. Dr. Setty, we really appreciate your time.

Shaun Setty, MD: Thank you so much for having me.

Deborah Howell (Host): For more information or to listen to a podcast of this show, please visit memorialcare.org. That's memorialcare.org. That's all for this time. I'm Deborah Howell. We will see you soon for another weekly dose of wellness brought to you by MemorialCare Health Systems. Have yourself a fantastic day.