Caring for the Smallest Hearts

Caring for the Smallest Hearts

Elise Turner: Hi, I'm Elise Turner. I am a mother of a cardiac kid and I'm a member of CHOP's Family Advisory Council.

Amanda Shillingford, MD, FACC: Hi, I'm Dr. Amanda Shillingford. I am a pediatric cardiologist at CHOP and I am very involved with the Fetal Heart Program and the Echocardiography Lab, and I am also a physician member of the Family Advisory Council and involved with the Cardiac Kids Neurodevelopmental Follow Up Program.

Elise Turner: What are you most excited about right now in the field of fetal heart medicine?

Amanda Shillingford, MD, FACC: There's a lot that has changed in just in the time when I was training in the early 2000s to now and the diagnoses are similar but the way we approach them with families and as far as counseling and even kind of the postnatal management and expectations, that has changed.

And I think a few things that I think are really exciting in the field. I think from a research standpoint, there's incredible work being done by Dr. Rychik, Dr. Gaynor, just looking at even the prenatal environment. For many years, we would tell families, there's nothing you can do. It is, this is the diagnosis and this is what we're going to monitor.

And then we'll manage the condition once the baby's born. But now we're learning that, well, maybe there are things that we can do that may improve the longer term outcomes. And, or maybe, you know, as we start to understand what that environment is. So I think that's really exciting because it's an opportunity, and I'm not talking necessarily about fetal interventions in the sense of doing some like a mechanical intervention, but, you know, just ways to change that environment. So I think that's really cool. And I think we're going to learn a lot about that. The other piece that I think is also changed and that I'm excited about is that there's much more collaboration among institutions. So I did my, all of my training at CHOP. And so I kind of learned the CHOP way. And then I went to two other institutions. You learn that every institution does things a little bit differently and they approach problems a little bit differently. But I think what we're seeing now is that there's this energy around collaboration among institutions, to share data, to share outcomes, to sort of share best practices and about what we say as far as prenatal counseling and the effect that has. And there's just a willingness, there's a Fetal Heart Society, there's registries looking at specific diseases, and there's also collaboration among disciplines. A physician is usually providing the diagnosis, but we recognize that nursing support is helpful.

We recognize that psychosocial support is really helpful, so we have a social worker who meets with families. We work with psychology, we work with maternal fetal medicine, like it's all a team approach. And I think that that has become more of the standard, not just at CHOP, but other places. I think that the other piece is how we approach the counseling with families.

So I sort of alluded to this a little bit earlier that as you were sharing your experience with me and your thoughts about what each of these doctor's visits mean. I think we're learning that it's stressful. Parents experience anxiety, and there's kind of this PTSD response from receiving the diagnosis.

So we're trying to figure out what we can do to change how we deliver the information, to get feedback from parents, recognizing that there's not going to be one way that we should provide information. And I think 15 years ago, we sort of laid out, this is the diagnosis. Now we're trying to figure out, so how does this particular parent in front of me respond to this information and what can we do as far as educating and supporting, because supporting the families early on is going to help afterwards with coping and I think those.

So those are the kind of the three big components that I think are really exciting. Really kind of change how we manage prenatal diagnosis.

Elise Turner: That's really interesting. I found that like so far in the conference, you know, a lot of the talks are very technical about the surgery itself, about diagnosing and, you know, all the science and research, but it's also a theme I'm hearing is it's also about the communication and having the emotional intelligence when you're dealing with different families and you're giving the news. So that's really great to hear that CHOP is working on the psychosocial side of things, the emotional side of things because, it is tough. It is tough

Amanda Shillingford, MD, FACC: Yeah. And it doesn't stop with just the prenatal diagnosis component. And I think in a large institution or enterprise like CHOP, we have the Fetal Heart Program. We have the, you know, the delivery portion. We have the CICU and the CCU and all of those components of care, although we have our teams within each of those areas, you know, the family travels through all of that.

And I should actually, say discharge to home in the outpatient setting. That is the part where we're, you know, continuing to work on linking that to support.

Elise Turner: Yeah, that's great. That's really great to hear. Often it's like a, it's, when you're pregnant and then, you know, when you're those early days, early months, you know, you're in the thick of it and you're almost in survival mode and it's sometimes takes much later to realize, realize what you've been through and how, how big of an impact it had on you.

So what's CHOP doing to grow and advance its Fetal Heart Program?

Amanda Shillingford, MD, FACC: The Fetal Heart Program itself works very closely with the CFDT program, our Fetal Therapy Program. And so there's a lot of collaboration with managing very complex and rare types of congenital abnormalities. And I think that's always going to be a really important part of the Fetal Heart Program.

Last year, I think we did 3, 700 fetal echocardiograms. It's one of the largest in North America and maybe even beyond. It's a huge program. And, but with that, one of the things that we're doing, which is another role I have is working with the community and saying, okay, how can we provide these services that we offer at the main campus out into the community?

You know, either having a clinic on the Main Line, which will open up a little bit more accessible for families, to partnering with some of the maternal fetal medicine offices so that we're just able to eliminate that need to drive into the hospital all the time. So we are expanding. That's a big change in how we're providing our services over the next, you know, I think probably over the next couple years.

We've already started to do some of that. So that's going to expand the scope of it even further. And then the third is kind of the same theme we were talking about, which is we are continuing to change our educational opportunities for families. So you probably remember 2012, you were given some diagrams on a piece of paper.

We wrote some stuff down and you know, in the newer generation, we can provide some more in depth educational material, whether it's digital modeling to help people kind of understand the three dimensional component, but also how do we provide this information that's accessible to everybody from education level, for language, for and just learners. Everybody's a different learner. Do they want something on an app? Do they want a piece of paper? Do they want to just have something that they can reference? So that is another way that I think that we are trying to expand our scope of, for the Fetal Heart Program.

Elise Turner: That's great. That's really exciting for the future.

Amanda Shillingford, MD, FACC: Yeah, it's been, you know, it turns out it's a lot of work when you really take your big goal of wanting to be accessible and how do we, how do we figure out what type of learner everybody is? One family may come in with the diagnosis that they have done some research on and they want all of the data, they want some of the public published literature and other families don't want that information. That's a little bit too overwhelming and so they want it broken down. Parents help us design this.

Elise Turner: Yeah, you really have to tailor everything is tailored to the patient, to the family.

Amanda Shillingford, MD, FACC: Yeah.

Elise Turner: Great. I just have one final question. What's one piece of advice that you can offer people who are carrying a baby with congenital heart disease?

Amanda Shillingford, MD, FACC: Yeah, well, I probably have more than one piece of advice, but I, you know, I think it's okay to be hopeful. At 20 weeks, that's normally when a diagnosis of congenital heart disease is made, and leading up to that time, parents often have kind of a vision of what they expect the rest of the pregnancy to be like, the delivery process, and that's a lot of information to receive.

But on the other end of that, there are many adults who were born with congenital heart defects and many of them are doing very well. They're going to college, they're pursuing graduate degrees, they have jobs, they have families of their own. You know, there's, you know, I think there's hope.

It's almost, it's almost as though we should make the diagnosis and we should also link people to the Adult Congenital Heart Group. And, and I think the other piece of advice I often provide to families is, there's going to be some unpredictability and some things that are uncertain, which that's actually probably true for anything in parenthood.

There will be some challenges. There will be some extra doctor's appointments, but hope is okay. And accepting some unpredictability, of course.

Elise Turner: I think that's a great message for parents and families and it's also CHOP's tagline, isn't it? Hope lives here.

Amanda Shillingford, MD, FACC: Yes.

Elise Turner: And that's, that's written on a wall. And I, you know, when we go to CHOP ourselves, we see that every time we go and we, great to see that.

Amanda Shillingford, MD, FACC: Yeah. And I, you know, it's okay to have a normal pregnancy. I guess that's the other thing I want to say is that you, it's okay to still enjoy your pregnancy even after finding this.

Elise Turner: Absolutely.

Amanda Shillingford, MD, FACC: The SDU is, you know, the midwives are great.

They allow you to have a normal delivery. Yes, you're, you know, the plan is that the baby will be in the cardiac intensive care unit and can look a little bit different for everybody, but.

Elise Turner: Just still have a baby shower, still celebrate it, still make the nursery, all that stuff.

Amanda Shillingford, MD, FACC: Yeah.

Elise Turner: Absolutely. Still do that stuff.

So thank you so much for being here today and taking time out of your busy day. Yeah. Really appreciate it.