Eight of every 1,000 babies is born with a heart defect.
Newborns with heart defects now have a range of treatment options, including heart surgery and even heart transplants.
Learn more about the available treatments from a UVA pediatric cardiologist.
Selected Podcast
Caring for Newborns with Congenital Heart Defects
Featured Speaker:
Organization: UVA Fetal Heart Program at UVA Children's Hospital
Dr. Thomas L'Ecuyer
Dr. Thomas L'Ecuyer is the Division Chief of Pediatric Cardiology at UVA Children's Hospital.Organization: UVA Fetal Heart Program at UVA Children's Hospital
Transcription:
Caring for Newborns with Congenital Heart Defects
Melanie Cole (Host): Eight of every 1,000 babies is born with a heart defect. Today we're talking about the range of treatment options available from UVA pediatric cardiologist, Dr. Thomas L'Ecuyer. Welcome to the show. So what is congenital heart disease, Dr. L'Ecuyer?
Thomas L'Ecuyer (Guest): This is formed before a baby is born, and congenital heart disease refers to some abnormality of development of the heart, which can include blood vessels being connected to improper chambers, holes in the heart, and absence of one or more chambers, blocked valves, things such as this. So basically it can be thought of as problems with the plumbing of the heart.
Melanie: Okay. So how common is this, Dr. L'Ecuyer? You're the Division Chief of Pediatric Cardiology at UVA Children's Hospital. How much are you seeing of this?
Dr. L'Ecuyer: Well, about 1 percent, a little bit less than 1 percent of babies are born with a Congenital Heart Defect, so we have clinics every day of the week, sometimes with more than one pediatric cardiologist here at UVA, and we're typically seeing 8 to 10 patients in a half-day session, all of which have the suspicion of heart disease and about 25 to 30 percent of which are actually found to have heart disease, so we're seeing quite a bit of it. In fact, I'd say that's 95 percent of the work that we do in pediatric cardiology is taking care of these kids.
Melanie: What causes this congenital heart disease?
Dr. L'Ecuyer: It's not known. There are some genetic syndromes where there are chromosomal problems that are associated with congenital heart disease. It is likely that there are genes that are abnormal that contribute to congenital heart disease, but they've largely been unidentified. So we've not identified particular factors that are responsible for this.
Melanie: How is this diagnosed and treated? Is it something that we know about prenatally, or do you only find out once the baby is born? Tell us a little bit about how that goes along.
Dr. L'Ecuyer: Well, I think that a significant number nowadays are diagnosed before a baby is born. Obstetricians are routinely doing ultrasounds on developing fetuses before a baby is born, and if a significant abnormality's appearing in the heart, which they attempt to look at, then they'll often ask a pediatric cardiologist to perform on more detailed scan on the heart in particular.Most of our major congenital heart defects, the most important ones are diagnosed before birth, and an additional significant percentage of these are diagnosed after birth, and they most commonly present either with a baby being blue or cyanotic, a baby having difficulty feeding and growing, or with an abnormal exam, such as the presence of a heart murmur.
Melanie: I imagine that the mother or the parents must be terrified to hear this. Give them some hope in what's going on in the world and the horizon picture of congenital heart disease in infants.
Dr. L'Ecuyer: Okay. Well, there's a significant percentage of congenital heart disease that does not really required treatment. So I think the most important thing is to connect them with a pediatric cardiologist who can make a specific diagnosis and can talk with them in detail about what the implications are for their child's health.Those that do require treatment most commonly require surgical treatment, and UVA has had a surgical program to treat congenital heart disease now for the last 30 years. It's continuously been present. It's the longest-standing program in the State of Virginia. Recent outcomes after congenital heart surgery are as good as any pediatric hospital in the United States, so we're very proud of this. So those that do require surgical treatments, some of them can be cured with a single surgery, some of them required stage treatments. A very small population will require more dramatic treatments, such as heart transplantation, and we've also have a heart transplant program for more than 20 years, which has been very successful, particularly within the last few years. So there's tremendous treatment options that are available for them.We also have the ability to perform non-surgical treatments of some congenital heart disease. We have a very busy cardiac catherization lab that offers invasive but less invasive treatment options for some kids with certain congenital heart defects. So I think that the idea is that we need to make the diagnosis, we need to meet with the families to discuss the options. There's no treatment option that's available that I don't think is available here at UVA.
Melanie: What about ongoing medical care after surgeries? Is there anything else do the parents need to know about, Dr. L'Ecuyer? About nutrition, medications, physical activity, future pregnancies? Speak about that for the parents, if you would.
Dr. L'Ecuyer: Well, those are all part of the counseling treatment program that we deliver to kids that have congenital heart disease. Many defects require one surgical treatment, and they might require periodic follow-up every one to two years throughout a child with the pediatric cardiologist. A smaller number of the diseases that we deal with require additional medical treatment on top of surgical therapy, and some kids are more debilitated than others. Our goal is—and what we are usually able to achieve—is a normal activity level and a normal childhood for these kids.There are some conditions that require restriction of physical activity. Most of them do not, and I think that's an individualized decision that's based on both the specific defect that the child has, their response to treatment, and the end result in terms of their heart function and the ability of their circulation to support vigorous exercise.These decisions are made -- some of them you can predict before the surgery takes place based on the anatomy of the defect that the child has. Many of them we sort of make these decisions based upon their response to treatment. So it's a highly individualized treatment program based on the defect and the child's response.
Melanie: At home, is this something that parents can deal with at home ongoing and these children have a pretty good outlook? What are the parents doing at home?
Dr. L'Ecuyer: We basically are able to achieve a normal childhood for the overwhelming majority of kids that have congenital heart disease, even if they require surgery. Most hospital stays after surgery for congenital heart disease are in the order of a week to 10 days, so it doesn't interrupt their lives tremendously. There's a recovery program. They don't need to be restricted from being around other children other than immediately after their surgery. These kids go to regular school, they play on childhood sports teams like everybody else, they learn and progress with the school system. So it's big shock for the families to find out about the diagnosis, and I think that they become surprised at how normally these kids can function. When the kids grow up, there's a slightly increased risk of a child with congenital heart disease having their own kids with congenital heart disease, so we generally have a specific counseling for them about if they choose to have families, it's a good idea to have the opportunity to have a prenatal ultrasound with a fetal echo program before the baby is born so that planning can take place and you'll have an idea before a baby is born about whether they share a similar heart problem or whether they've been part of the 97 percent of kids born to people of heart disease that turn out to have perfectly normal hearts.
Melanie: How important is nutrition for children who have heart defects as they grow, as you say that they're normal? Is there any kind of nutritional component here?
Dr. L'Ecuyer: Nutrition's critical, because growth is very important in terms of their response to their treatment for heart disease. We work closely with nutritionists, particularly during their in-patient stays, to develop a nutrition program that's appropriate for each of these kids. It is extremely important; their outcomes are better if they're well nourished. Their outcomes are also better if they're not overweight, so I think that proper childhood nutrition, which is often very similar to the nutrition of a child that doesn't have heart disease, is important, and we help the families make sure that's delivered.
Melanie: Why should families choose UVA for their treatment, Dr. L'Ecuyer?
Dr. L'Ecuyer: Well, the first thing is I think we have a very tight focus on providing families what it is that they need, so we provide comprehensive care. Every subspecialty in pediatric cardiology that's needed, whether it be electrophysiology, interventional cardiac catheterization, surgical treatment, medical treatment, as far as transplantation in any complication that comes up, we have specialists that are able to take care of that. That's that first thing. The second thing, is that we work closely with the Pediatricians who provide the medical home for these kids. We work closely with them to keep them out of the hospital and to keep them in the local communities and allow them to achieve the best lives that they can have. Third, I think that our outcomes are comparable to the very best programs in the country. Our goal is continuous improvement. We regularly analyze what we do. We pay attention to what our families say about the service we're providing, and I make sure that we respond to that.
Melanie: Thank you so much. For more information, you can go to uvahealth.com. You're listening to UVA Health System Radio. I'm Melanie Cole. Thanks for listening.
Caring for Newborns with Congenital Heart Defects
Melanie Cole (Host): Eight of every 1,000 babies is born with a heart defect. Today we're talking about the range of treatment options available from UVA pediatric cardiologist, Dr. Thomas L'Ecuyer. Welcome to the show. So what is congenital heart disease, Dr. L'Ecuyer?
Thomas L'Ecuyer (Guest): This is formed before a baby is born, and congenital heart disease refers to some abnormality of development of the heart, which can include blood vessels being connected to improper chambers, holes in the heart, and absence of one or more chambers, blocked valves, things such as this. So basically it can be thought of as problems with the plumbing of the heart.
Melanie: Okay. So how common is this, Dr. L'Ecuyer? You're the Division Chief of Pediatric Cardiology at UVA Children's Hospital. How much are you seeing of this?
Dr. L'Ecuyer: Well, about 1 percent, a little bit less than 1 percent of babies are born with a Congenital Heart Defect, so we have clinics every day of the week, sometimes with more than one pediatric cardiologist here at UVA, and we're typically seeing 8 to 10 patients in a half-day session, all of which have the suspicion of heart disease and about 25 to 30 percent of which are actually found to have heart disease, so we're seeing quite a bit of it. In fact, I'd say that's 95 percent of the work that we do in pediatric cardiology is taking care of these kids.
Melanie: What causes this congenital heart disease?
Dr. L'Ecuyer: It's not known. There are some genetic syndromes where there are chromosomal problems that are associated with congenital heart disease. It is likely that there are genes that are abnormal that contribute to congenital heart disease, but they've largely been unidentified. So we've not identified particular factors that are responsible for this.
Melanie: How is this diagnosed and treated? Is it something that we know about prenatally, or do you only find out once the baby is born? Tell us a little bit about how that goes along.
Dr. L'Ecuyer: Well, I think that a significant number nowadays are diagnosed before a baby is born. Obstetricians are routinely doing ultrasounds on developing fetuses before a baby is born, and if a significant abnormality's appearing in the heart, which they attempt to look at, then they'll often ask a pediatric cardiologist to perform on more detailed scan on the heart in particular.Most of our major congenital heart defects, the most important ones are diagnosed before birth, and an additional significant percentage of these are diagnosed after birth, and they most commonly present either with a baby being blue or cyanotic, a baby having difficulty feeding and growing, or with an abnormal exam, such as the presence of a heart murmur.
Melanie: I imagine that the mother or the parents must be terrified to hear this. Give them some hope in what's going on in the world and the horizon picture of congenital heart disease in infants.
Dr. L'Ecuyer: Okay. Well, there's a significant percentage of congenital heart disease that does not really required treatment. So I think the most important thing is to connect them with a pediatric cardiologist who can make a specific diagnosis and can talk with them in detail about what the implications are for their child's health.Those that do require treatment most commonly require surgical treatment, and UVA has had a surgical program to treat congenital heart disease now for the last 30 years. It's continuously been present. It's the longest-standing program in the State of Virginia. Recent outcomes after congenital heart surgery are as good as any pediatric hospital in the United States, so we're very proud of this. So those that do require surgical treatments, some of them can be cured with a single surgery, some of them required stage treatments. A very small population will require more dramatic treatments, such as heart transplantation, and we've also have a heart transplant program for more than 20 years, which has been very successful, particularly within the last few years. So there's tremendous treatment options that are available for them.We also have the ability to perform non-surgical treatments of some congenital heart disease. We have a very busy cardiac catherization lab that offers invasive but less invasive treatment options for some kids with certain congenital heart defects. So I think that the idea is that we need to make the diagnosis, we need to meet with the families to discuss the options. There's no treatment option that's available that I don't think is available here at UVA.
Melanie: What about ongoing medical care after surgeries? Is there anything else do the parents need to know about, Dr. L'Ecuyer? About nutrition, medications, physical activity, future pregnancies? Speak about that for the parents, if you would.
Dr. L'Ecuyer: Well, those are all part of the counseling treatment program that we deliver to kids that have congenital heart disease. Many defects require one surgical treatment, and they might require periodic follow-up every one to two years throughout a child with the pediatric cardiologist. A smaller number of the diseases that we deal with require additional medical treatment on top of surgical therapy, and some kids are more debilitated than others. Our goal is—and what we are usually able to achieve—is a normal activity level and a normal childhood for these kids.There are some conditions that require restriction of physical activity. Most of them do not, and I think that's an individualized decision that's based on both the specific defect that the child has, their response to treatment, and the end result in terms of their heart function and the ability of their circulation to support vigorous exercise.These decisions are made -- some of them you can predict before the surgery takes place based on the anatomy of the defect that the child has. Many of them we sort of make these decisions based upon their response to treatment. So it's a highly individualized treatment program based on the defect and the child's response.
Melanie: At home, is this something that parents can deal with at home ongoing and these children have a pretty good outlook? What are the parents doing at home?
Dr. L'Ecuyer: We basically are able to achieve a normal childhood for the overwhelming majority of kids that have congenital heart disease, even if they require surgery. Most hospital stays after surgery for congenital heart disease are in the order of a week to 10 days, so it doesn't interrupt their lives tremendously. There's a recovery program. They don't need to be restricted from being around other children other than immediately after their surgery. These kids go to regular school, they play on childhood sports teams like everybody else, they learn and progress with the school system. So it's big shock for the families to find out about the diagnosis, and I think that they become surprised at how normally these kids can function. When the kids grow up, there's a slightly increased risk of a child with congenital heart disease having their own kids with congenital heart disease, so we generally have a specific counseling for them about if they choose to have families, it's a good idea to have the opportunity to have a prenatal ultrasound with a fetal echo program before the baby is born so that planning can take place and you'll have an idea before a baby is born about whether they share a similar heart problem or whether they've been part of the 97 percent of kids born to people of heart disease that turn out to have perfectly normal hearts.
Melanie: How important is nutrition for children who have heart defects as they grow, as you say that they're normal? Is there any kind of nutritional component here?
Dr. L'Ecuyer: Nutrition's critical, because growth is very important in terms of their response to their treatment for heart disease. We work closely with nutritionists, particularly during their in-patient stays, to develop a nutrition program that's appropriate for each of these kids. It is extremely important; their outcomes are better if they're well nourished. Their outcomes are also better if they're not overweight, so I think that proper childhood nutrition, which is often very similar to the nutrition of a child that doesn't have heart disease, is important, and we help the families make sure that's delivered.
Melanie: Why should families choose UVA for their treatment, Dr. L'Ecuyer?
Dr. L'Ecuyer: Well, the first thing is I think we have a very tight focus on providing families what it is that they need, so we provide comprehensive care. Every subspecialty in pediatric cardiology that's needed, whether it be electrophysiology, interventional cardiac catheterization, surgical treatment, medical treatment, as far as transplantation in any complication that comes up, we have specialists that are able to take care of that. That's that first thing. The second thing, is that we work closely with the Pediatricians who provide the medical home for these kids. We work closely with them to keep them out of the hospital and to keep them in the local communities and allow them to achieve the best lives that they can have. Third, I think that our outcomes are comparable to the very best programs in the country. Our goal is continuous improvement. We regularly analyze what we do. We pay attention to what our families say about the service we're providing, and I make sure that we respond to that.
Melanie: Thank you so much. For more information, you can go to uvahealth.com. You're listening to UVA Health System Radio. I'm Melanie Cole. Thanks for listening.