Cheryl Martin (Host): This is Children's Health Checkup, where we answer parents' most common questions about raising healthy and happy kids. I'm Cheryl Martin. On this episode, our topic is fetal heart conditions. Our expert is Dr. Jenna Keelan, a pediatric cardiologist at Children's Health, Assistant Professor at UT Southwestern and Co-Director of Fetal Cardiology Education.

Having a baby is a wonderful experience, guaranteed to bring surprises along the way. But learning that your unborn baby may have a heart condition is news no expectant parent wants to hear. So, we're providing information that parents may want to know in the event they are referred to a fetal cardiologists. Dr. Keelan, thanks so much for coming on to talk about this topic.

Jenna Keelan: Thank you so much for having me.

Host: So, what are common reasons to be referred to see a fetal cardiologist?

Jenna Keelan: Yeah. So, we get referrals for several reasons. One of the most common reasons is for screening indications. So if the mother has diabetes or there's a family history of congenital heart disease, there's an increased risk in those populations for the fetus to have congenital heart disease, so we screen those children. We also get referrals if the MFM or OB is concerned for extracardiac abnormalities or genetic abnormalities, because those can be associated with congenital heart disease as well. And then of course, if your MFM or OB is suspecting congenital heart disease based on the anatomy scan, that's another reason for a referral for a fetal cardiologist.

Host: So, what can parents expect at a fetal cardiology appointment?

Jenna Keelan: Yeah. That's a great question. So, at our visits, the first thing is that you get an intake form filled out by our fetal nurse coordinators. They take your family history, your personal history, any medications that you're on. And then after you're finished with that, then you go for a fetal echo. And these echoes can take anywhere between 45 minutes to an hour to complete, which is a pretty long time, so don't be surprised if it's taking that long. It doesn't mean that anything's wrong. And the scan is typically performed by one of our fourth year fellows along with a sonographer. And then, the attending will always come in afterwards to take some pictures themselves, getting their hands on the probe. So, that also doesn't mean that anything is wrong.

After the echo's complete, then we do the counseling. So even for families that have a normal fetal echo, we bring them into another room and talk to them about some of the limitations of the tests related to the resolution of the scan and some of the changes in circulation that happen after birth. But if it is abnormal, we sit down with the family and discuss everything, including the diagnosis, using diagrams, what this might mean for your delivery, if you need to change your delivery location or your method of delivery, and then, what the postnatal plan will be for the baby whether that includes surgery or not. And then, we also talk about things like any genetic conditions or neurodevelopmental issues that may be associated with your baby's specific type of congenital heart disease. And then, any long-term outcomes or future interventions that they may need down the line.

Host: So, how common are fetal heart problems and what's the range of congenital heart defects that can be diagnosed prenatally?

Jenna Keelan: So, about one in every hundred children are born with congenital heart disease. And there is a wide range of congenital heart disease in terms of severity. So, I kind of like to break it down into three categories. Those that have simple congenital heart disease like a hole in the heart or a ventricular septal defect that may not require any intervention and could close on its own.

Then, there's the groups of congenital heart disease that we know is going to need surgery, but it can be repaired with two pumping chambers. And so, an example of that would be tetralogy of Fallot. And then, the final group are those that will likely need multiple surgeries, but can only be palliated with one pumping chamber. And we refer to this group as single-ventricle lesions, and that includes hypoplastic left heart syndrome or tricuspid atresia. And I like to let parents know kind of what category their child falls into at the beginning of my counseling sessions to kind of give them the big picture of what to expect for this conversation.

Host: Do we know what causes congenital heart defects?

Jenna Keelan: So, some types of congenital heart defects are linked to specific genetic conditions or syndromes that can be passed down in the family or it could be a new mutation in the fetus. But in a lot of cases, congenital heart disease is sporadic, meaning that it occurs randomly without us knowing a clear reason why.

But I think it's important, and I tell all of my families this, that it is not their fault. I think that's a very common unspoken fear that mothers have, that it's something that they did during the pregnancy or didn't do that caused their baby to have a congenital heart defect, and that's certainly not the case.

Host: You've already talked about the three categories. If you can go into more detail about the treatments available, because it seems like all three categories, they can be treated successfully most of the time.

Jenna Keelan: So, we do have a lot of tools to treat congenital heart disease. The most common thing that we do for a lot of these common lesions like ASDs or VSDs is just observation. So as long as the child is asymptomatic, some of these lesions, their natural history is to resolve on their own. And so, observation is certainly one of the things that we use. We have medications available to treat babies who are in heart failure or who have abnormal heart rhythms or whose heart function isn't as good as it could be. So, that's another tool that we have.

In terms of interventions, we can do cardiac catheterizations for some of these babies. So, what that is, is a non-invasive procedure where they use the blood vessels to go up into the heart and either close holes or close vessels, they can stent vessels open, they can put in valves in older children through this type of procedure. And then, the final method that we have to treat congenital heart disease is surgery. And we can use it to treat multiple different types of conditions. And there are many different types of surgery available depending on the baby's anatomy.

Host: I love when earlier you said that you assure the parents that they are not at fault. Do you have other advice for parents who have been referred to a fetal cardiologist?

Jenna Keelan: Yeah. This is a great question also. So, one of the biggest pieces of advice I have is if you have someone that you can bring to the appointment, whether it's a friend or a family member or a spouse to come with you to provide not only support, but then during the counseling, there's so much information that we talk about, and getting a diagnosis of congenital heart disease is just an overwhelming experience. So, having someone else there who can listen and be another set of ears during that session, I think is really invaluable, even if it's just someone who you call over the phone to listen in. I think that's a really important thing to do.

Another piece of advice I would have would be to write down any questions that you have, whether it's before your first appointment or between your first and your second appointment, because it's easy to forget all the questions that come up. And sort of writing them down in one spot, I think, is important as well.

And then, finally, just know that your team is there to help you. We have a big multidisciplinary team made up of social workers, our heart surgeons, our neurodevelopmental team, our CVICU team, our palliative care team. And we really take a multidisciplinary approach to our goal is to really support you, to inform you, and to prepare you for what to expect after the baby's born.

Host: This has been some extremely helpful information for those who receive the diagnosis of a fetal heart defect in their unborn child. Dr. Jenna Keelan, thank you.

Jenna Keelan: Of course. Thank you for having me.

Host: For more information, visit childrens.com/fetalheart. Again, that's childrens.com/fetalheart. Thanks for listening to Children's Health Checkup. If you found this podcast helpful, please rate and review it and share the episode on your social media. And please follow Children's Health on your social channels.