Adult Congenital Heart Disease – Common Questions and Answers

Podcast Transcript

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Margaret Fuchs, MD:
Hi, my name is Margaret Fuchs. I'm an adult congenital heart disease cardiologist at the Cleveland Clinic. I've been asked today to answer some questions that patients commonly ask about congenital heart disease in the hopes of sharing some information, and helping folks find their way to the right place. So, I'll just kind of answer some questions as they come.

Margaret Fuchs, MD:
I think the first most important question is what is congenital heart disease and how does it pertain to adults? So, congenital heart disease is just a heart condition that someone is born with. Usually, it has to do with something that's different about the structure of their heart, about a valve, or a hole in the heart, or the way that the heart is built. And it can be different than usual, and a lot of those patients have surgeries or interventions in childhood, and then also need to see an adult cardiologist after they grow up to that age. So, that's congenital heart disease in a nutshell, but of course, there's a huge spectrum. Different patients are different.

Margaret Fuchs, MD:
What types of congenital heart disease can present in adulthood? So, what if you were a normal kid and you didn't know that you had congenital heart disease, and those can be variable. So, we oftentimes can find holes in the heart, what we call an atrial septal defect. That's something that can present in adulthood. Sometimes there are valve problems that were maybe mild in childhood and not appreciated, and then they can become more important and present in adulthood. So, there's a really a big range of congenital heart disease that sometimes people don't know that they have and presents in adulthood. And usually, in those situations, patients may feel palpitations or heart racing or find that they're short of breath with activity. Those are common things that sometimes patients notice even in the prime of their life, in their twenties or in their thirties, and those are symptoms that are really important to pay attention to. A lot of times, those things are benign or are things that are easily taken care of, but every once in a while, that represents congenital heart disease. And so, I commonly see patients with those complaints.

Margaret Fuchs, MD:
At what age should a child with congenital heart disease begin to transition over to adult cardiology care? And that's really a hard time, I think, for a lot of our patients because a lot of patients have had congenital heart disease since they were born and know their pediatric cardiologists and really love their pediatric cardiologists. And the pediatric offices are brightly colored and fun to visit, and the nurses, and so there's a lot of friendly faces. So, that can be a really hard time when we move to pediatrics adulthood to kind of get to know a new face like me or some of my colleagues.

Margaret Fuchs, MD:
In general, sometimes between age 18 to 21 is when most patients make that transition over. Sometimes it depends on if they have other health conditions that sort of fall more into the realm of pediatrics or adult cardiology that can cause a patient to follow longer with pediatrics or transition sooner to adult care. If it's a female patient and that patient becomes pregnant, typically that's the time that we would transition the patient over to adult care. But typically, somewhere in that late adolescent, high school graduation time is when I often see patients for the very first time.

Margaret Fuchs, MD:
And that's a really special visit, and I try to make some extra time to spend with patients at that very first transition visit. It's a time for the young adult to get to know their heart disease maybe on a more independent level. They're going to start perhaps coming without their parent, and so we sit down with a heart diagram and we draw it out. What's your heart like, what are the terms, if you're in an emergency room somewhere and you have trouble, what are the things you need to be able to tell someone else about so that they can take care of you the right way. And it's also a really fun time because I love to meet young people who are often really inspiring and have had already quite a life story and have a lot of future ahead of them. So, I love those visits, and typically around that age is when we begin to make that transition over.

Margaret Fuchs, MD:
If someone has had congenital heart disease surgery as a child, do they still need to see an adult congenital cardiologist like me? The answer is yes. Please come back and see us. A lot of people have the impression that you are cured or fixed or corrected. Those are all terms that we see kind of floating around in the literature, and it is our sincere hope that the surgeries that our patients have as children serve them really well, and sometimes there is a surgery that's done in childhood, and we never need to do anything ever again, but sometimes there are things that come up. Sometimes a valve surgery has been done and the valve that was put in is starting to get old. Sometimes there's a hole in the heart that we didn't know about that's still left.

Margaret Fuchs, MD:
There's a lot of different things that can happen over the course of a patient's life with congenital heart disease and even simple things that we think are fixed sometimes can have long-term consequences. The development of pulmonary hypertension or heart rhythm disturbances can happen even if the patient has sort of "fixed" or closed holes or cured congenital heart disease. And so, there really is no form of congenital heart disease where you're "done" with the cardiologist. A lot of patients only need to come every few years to see someone like me and otherwise are doing great. Some patients need to come more often. But I would encourage those who have maybe had some uncertain diagnosis, they're not sure what it was in childhood, it's always great to come in, and have a visit, and just get checked up, and make sure that we sort of know what's going on, and what to look for in the future.

Margaret Fuchs, MD:
If you have congenital heart disease, should your child be tested and where does genetic testing come into play with congenital heart disease? I think that that depends to some degree on what kind of congenital heart disease is present. There are some conditions that run in families. We know that moms and dads who have congenital heart disease have a slightly higher risk of their child having congenital heart disease. It's not always the exact same type. It's not as if mom or dad has one specific thing that their children will have exactly the same thing. Sometimes just congenital heart disease, in general, can cluster in families. Sometimes it's very random though.

Margaret Fuchs, MD:
So, 1% of all babies born have congenital heart disease of some form, and most of those babies don't have a parent that had congenital heart disease. And so, when we meet a mom or a dad or a soon-to-be mom or dad, and we talk about things like family planning, one of the things we talk about is, is your condition something that's a higher risk or lower risk for being passed on. Typically, if a mom is pregnant and either the mom or the dad has congenital heart disease we'll recommend an echo of the baby while the baby's still in Mom's belly at about 20 weeks, and that's to look for congenital heart disease at that time. And so, those are all factors that we consider.

Margaret Fuchs, MD:
There are some genetic tests that can test for specific things that makes some patients at higher risk for congenital heart disease. But at this stage of the game, most congenital heart disease, we can't find a specific gene or a specific test. And so, we rely on echoes and other sort of imaging tests to look for congenital heart disease in family members.

Margaret Fuchs, MD:
If you have congenital heart disease, what types of symptoms could come up that mean you need to go back and see your doctor again? So, I think most importantly as we've talked about, if you have congenital heart disease or had it as a child and had a surgery as a child, you really should be in touch with us intermittently anyways, even if you're feeling awesome because that's the best time to see us is when I can say, "You're doing great and come back later."

Margaret Fuchs, MD:
But there are some things that I definitely want to know about in my patients. So, if you're having chest pain, especially if you're having chest pain with activity, but even if you just have random chest pains here and there, that's important. If you're short of breath, if you go out to exercise and it's harder than it used to be, if you're having palpitations, if your heart feels like it's racing or it's out of rhythm, if you're fainting, or you feel like you're going to fall over, those are all important things. And some of those things can happen in the course of a regular person's life, and sometimes they don't mean very much at all, but sometimes there are things that come up in patients with congenital heart disease, and those can be symptoms that we need to know about. And oftentimes at that time, we'll get an EKG or we get an echo, or some other testing, depending on what's going on to try to sort that out better. But the most important thing is to keep in touch with us so that we know how to reach you and you know how to reach us if something comes up.

Margaret Fuchs, MD:
And finally, a question about lifestyle, diet, exercise. Are there anything in particular that congenital heart disease patients should do differently than regular? And I think most importantly, it's just taking care of yourself and keeping yourself healthy. Because patients have congenital heart disease, we don't want other things to develop later in life. So, all adults, as we get older, have a risk for coronary artery disease or heart attack type heart disease, and that's something we work hard to prevent in our congenital heart disease population.

Margaret Fuchs, MD:
Some of that is not preventable, but taking good care of yourself, keeping your weight at an ideal level, being active, and watching your food choices and your cholesterol levels can all help prevent acquired heart disease as opposed to the congenital variety, and those are all really important things for our congenital heart disease population. It's also really important that our patients feel empowered to be active. I think I meet a lot of patients who are worried about their health and worried about their heart, and afraid if they exercise too much that they're going to stress the system or somehow damage their hearts. That's rarely the case. Most of the time exercise is good for the body. It's also good for the mind, and it also helps us know how you're doing because if you're active and you can't do maybe as quite as much as you used to do, that might mean we need to look into something further. So, there's lots and lots of reasons that congenital heart disease patients should feel empowered to be active, and enjoy life, and enjoy the things that they enjoy doing, and especially be involved in physical activity.

Margaret Fuchs, MD:
Thank you so much for joining us today. It was a pleasure to answer some of the questions that come up for our patients. I hope to meet some of you in clinic and would be delighted to do so, and everyone, have a great day.

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