Transcription:

Carrie Alden: ,Because we are such a large heart center. We have some different treatments that may not be available at other heart centers.

And so we want to make sure that families are aware of those things.

Maggie McKay (Host): When a child is diagnosed with a serious medical condition or illness, many families consider seeking a second opinion. Anne and Robert H Lurry Children's Hospital of Chicago makes this process easy for families seeking peace of mind that their child is getting appropriate medical care from experts in their field. The hospital offers second opinion programs through in person and virtual appointments for many complex medical issues, including brain tumors and fetal health services.

One of their most profound second opinion programs is that with the Lurry children's nationally ranked heart center today, we'll talk with three of the leaders from the center about when second opinions matter. Dr. Stuart Berger co-director of the pediatric heart center at Lurry Children's. Carrie Alden, associate chief nursing officer for advanced practices, and Jillian Wilken, pediatric cardiology nurse. This is Precision, Perspectives on Children's Surgery, a podcast from Lurry Children's Hospital. I'm Maggie McKay. What a pleasure to have you three here today. I am so grateful. You could clear your schedules and all get here at the same time.

Dr Stuart Berger: Thanks Maggie.

Jillian Wilken: Thank you very much.

Maggie McKay (Host): Can each of you please introduce yourselves? We'll start with Dr. Berger.

Dr Stuart Berger: Well, thank you again. My name is Stuart Berger. I am a pediatric cardiologist. I am the division head of pediatric cardiology here at children's hospital and the medical director and co-director of the heart center.

Maggie McKay (Host): Okay. And Carrie Alden.

Carrie Alden: Hi, I'm Carrie Alden and I am the associate chief nursing officer for the advanced practice providers at Lurry Children's Hospital. Practice clinically as a nurse practitioner in the cardiology department.

Maggie McKay (Host): And Jillian Wilken.

Jillian Wilken: My name is Jillian. I am a pediatric cardiology nurse with the heart center and I am also the nurse for the Cardiology and Cardiac Surgery Second Opinion Program.

Maggie McKay (Host): Okay. So let's dive right in. Please tell us about the heart center's Second Opinion Program. How did it get started and why, and what do you do for families? Dr. Berger, can you start us off?

Dr Stuart Berger: Absolutely. We had thought that it would be a reasonable and helpful thing to have a second opinion clinic and a second opinion program in particular. And we just did it and obviously, or maybe not so obviously, I give tons of credit to Jill and Carrie and, our administrative staff were putting in place all the parts of it that needed to be put in place in order to make it happen. And the reason for it is. We wanted to give not only families, but pediatricians and even pediatric cardiologists in the community to tap on the expertise of our staff. and I'm sure we'll talk more about this as we go along, but we are very lucky to have a large group of pediatric cardiologists and pediatric surgeons.

And subspecialists beyond that who have a great expertise in all the nuances of pediatric cardiology, whether it's heart failure, transplant, cardiac, cath surgery, imaging. And we really thought it would be beneficial for families, practitioners to have the ability with a complicated case, and even maybe not so much a complicated case. Just a case that requires peace of mind for families to go somewhere else to run the, information by another group, to look at the images, to decide if the right tests or other tests need to be done.

We just feel that we have a level of expertise where. we wanna give the community back the ability to get that peace of mind, make sure the right thing's doing collaborate with our partners. and it's been wonderful. It's been a great pleasure to do this and we are growing and growing as time goes by.

Maggie McKay (Host): It sounds like a great idea. Carrie, what do you do for families?

Carrie Alden: So I think, when a family receives the news that their child has a diagnosis of a congenital heart disease, it can be really challenging and overwhelming. And so I think. The second opinion program can actually provide families peace of mind, more information about their heart defect, and then access to a diverse team of healthcare specialists. I think for other providers in the area, including cardiologists and primary care physicians, I think that can also give them some reassurance on the diagnosis and making sure that they're doing everything they possibly can for families.

Maggie McKay (Host): And what are some of the heart conditions or diagnoses a family may seek a second opinion for and why Dr. Berger?

Dr Stuart Berger: It's anything from what we view in our world as complex or not complex, it could be anything from various forms of congenital heart disease to acquired things. So for example, One of the larger complexities of things we deal with are in what we call the single ventricle realm, where patients need multiple operations. They end up getting to what we call a Fontan physiology. And every step along the way, there are particular nuances and issues. Some of them may be related to the questions about need for a heart transplant and other things that we might be able to do from a heart failure team standpoint to avoid transplant, or to at least delay transplant.

Some of the things we may be asked about are there particular interventions, cardiac interventions in the cath lab that can be performed to either avoid a surgery or to delay a surgery? With COVID now there's been a lot of kids that we have seen, related to COVID and post COVID complications. And we've been asked to see those kids and weigh in on, whether there's things that can be done. A lot of questions about vaccinations and the COVID vaccine. So it can be anything from those complicated things to, kids with what we view as relatively simple things.

VSDs or ASDs, of course, these are not simple because they may need an intervention and as surgery or otherwise, but questions about whether patients need interventions and what interventions they need always come up and really anything from soup to nuts as it relates to the heart of children.

Maggie McKay (Host): And Jillian, would you like to add anything?

Jillian Wilken: Dr. Berger did an excellent job explaining that. exactly what he said. We see so many heart conditions. I mean, from bicupsip aortic valves to like he said, single ventricle defects, heart transplant patients. There's just such a wide variety. And I love this question because it touches base on one of the reasons why I love being the nurse for this program is that we see a vast variety of defects and heart conditions. And I love the learning aspect and I love seeing all different kinds of patients.

Maggie McKay (Host): So nice. Carrie, why does Lurry children's offer second opinions? Why is its heart center qualified to do this?

Carrie Alden: So the heart center at Lurry Children's Hospital is actually the number one cardiology and heart surgery program in Illinois, and we're top 10 in the nation. And so what we can provide is an interdisciplinary approach. Since we have such a diverse group of healthcare specialists and we can give families as well as other, healthcare providers, a holistic evaluation in an outpatient setting. So because we have such a diverse group of healthcare specialists, we can really get everyone together and get their opinion so that we make sure that we give a holistic evaluation to families.

Maggie McKay (Host): And Carrie, and maybe Dr. Berger, you can also answer this. What is the process like for making a treatment plan?

Dr Stuart Berger: Well, it's in a very important question because number one, it depends upon the particular issue or abnormality that we're dealing with. And very often it involves a, multidisciplinary approach, it may involve one of our surgeons. It may have involved one of our imaging docs. More often than not, could involve one of our interventional cath docs, our intensive care unit docs. And I also want to say it could very often involve, the referring physician, a pediatrician, even a cardiologist from another center more often than not. We'll get a referral from another cardiologist. Hey, can you review this information, meet with the family, give us your opinion?

And we actually did that on a patient from Minnesota very recently. And so that treatment plan will include their referring doc and it should, of course, going over the plan, giving people our ideas, listening to what their ideas might be, because no matter what, this is gonna be a joint, effort and a joint care plan that involve not only people here, but people out in the community. So the treatment plan will depend upon the reason that the child is being sent. But it usually is very multidisciplinary and the goal is to make it collaborative with the family, of course, and with the referring docs. So, it's an intricate process, but it's something that we can do in a very reasonable and rapid fashion and get everybody needs to be involved involved.

Carrie Alden: Yeah, I think, that is what we can provide that access to is just multiple different specialists. we can do that in many different ways. We can do it through telemedicine. We can do it through families actually coming to Lurry children's hospital to meet with all of our specialists. And we're also able to do that in one day. And so that families can meet everyone at the same time, which I think is really helpful for families.

Maggie McKay (Host): I bet because it's gotta be so stressful to begin with, but then they have to come back and forth, back and forth for different appointments. That's amazing that you can coordinate like that. Carrie and Jillian, can you talk about, maybe you have an example of how this program helps patients we'll start with you, Jillian?

Jillian Wilken: Yes. So I have not been in this role very long. And since I have been in this role, we have mentioned that these patients who come through our clinic, they don't need to be complex. There are some that are complex though. And our program. The patient doesn't need to be complex in order for us to help them. I have had a couple of patients that I have had the pleasure of meeting over the last couple of months where we are still in touch with family today. and they are so grateful that we have been able to get them in pretty quickly, and that we have been able to really coordinate an appointment where they can meet with all the providers.

I think that provides a lot of reassurance for families. And that really provides some reassurance and it puts them a little bit at ease and they're able to meet with everybody at one time, and not have to go back and forth between visits. I think that's really helpful for patients and families.

Maggie McKay (Host): I bet it lessens the stress a lot. Carrie, do you have any maybe examples maybe a patient that stands out in your memory where, they were helped out by this program?

Carrie Alden: I think, as we've all talked about, we see such a wide variety. Patients. So for example, we may see, a family that their child's diagnosed with a heart defect and they just want some reassurance that the diagnosis is correct and that the treatment plan is correct. And so that can really provide them that reassurance that they. Are at the right place and they're receiving the right treatment. Then we also have families that their child may have been diagnosed with a complex heart defect, and they wanna make sure that they are at the right program. And so they may be visiting different programs to see what they can offer.

And then they may decide to come to Lurry Children's to transfer their care here. And then we also have international patients that we see as well. And so we may just review medical records for them to make sure that they're going to the right place, or if they have the opportunity to transfer care here at Lurry children's and then the last big group that we see. There are, area cardiologists as well as primary care physicians that may just wanna make sure and have that reassurance as far as a diagnosis goes as well as what treatments are available, because we are such a large heart center. We have some different treatments that may not be available at other heart centers.

And so we wanna make sure that families are aware of those things. I think key things is that, we recently saw a family that, received a diagnosis and was recommended to have surgery and they came to us for a second opinion. And we could actually offer that as Dr. Berger talked about, through a cath procedure instead of an open heart surgery, because we have such an extensive cath lab as well as specialists that are. And so we were able to offer to the family that we could actually do the intervention without requiring open heart surgery. And I think that was really reassuring to that family.

Maggie McKay (Host): That must have been wonderful news to them. Carrie, how quickly can a family generally see one of your specialists for a second opinion? Can you tell us about the process families go through to reach your experts, to get the second opinion?

Carrie Alden: Sure we can usually see families within a week. The key thing is that if they already have had testing done in their area, we want to make sure that we can get a hold of that testing so that it does not have to be repeated here. Sometimes we actually will have to repeat the testing here because we have such great imaging, that may not be available in the area that they're at. So sometimes we do repeat, but we do like to get that information that's already been done to save the families that time. And sometimes that can take us a little bit of time to get all of that information, but we usually can see them within a week.

There's multiple ways that families can get to us. They can either go on to our website at Lurry Children's and we actually have a webpage for the priority, Second Opinion Program. And we have an online form that they can fill out that goes directly to us as a group. They can also call the main number at Lurry Children's or 1-800 kid-stack. Which allows, them to get to the scheduling department. And then that gets referred directly to us as well. or they can actually call the Larry children's cardiology department as well, too. And they can be connected to us that way.

Maggie McKay (Host): That's great. Boy, you have covered all the bases to make it as easy as possible. And I'm sure parents going through this really appreciate it.

Carrie Alden: Yeah, I think that is the key thing is we wanna make the process as easy for families as we possibly can, knowing that it's such a stressful time for them.

Maggie McKay (Host): Definitely. Dr. Berger, what is your specialty and how did you get into it?

Dr Stuart Berger: Well, I'm a pediatric cardiologist. I'm also trained and my training goes back. We're not on camera here. So you can't see how old I am. My training goes back a long way. I also trained as a neonatologist and an intensivist, but my primary specialty is pediatric cardiology. I got into it because, many, many years ago, and again, I won't give you a number, cuz it'll show my age. But I, was inspired by my mentor, who is a man by the name of Renee Arcilla, who was my director and my mentor and my hero at the university of Chicago. And I loved what he did and how he did it. And he inspired me to be a pediatric cardiologist.

And I hope I can someday be as smart and as wonderful as him. But I love the field and I, was truly inspired by him to do what I'm doing now.

Maggie McKay (Host): That's so nice. And Carrie, what's your specialty? How'd you get into it?

Carrie Alden: So I am an advanced practice nurse in cardiology. And so I actually started out at Lurry Children's hospital, which was formerly Children's Memorial Hospital as a pediatric ICU nurse. And then I went back to graduate school knowing that the patients that were my favorite to take care of in the pediatric ICU were the children that had congenital heart disease. The reason being is that we have such a high survivor rate for children that are born with congenital heart disease. And so I was, super proud of that.

And I was really interested in the long term outcomes and how these children were doing as adults. And so I was able to go back to school to become an advanced practice provider. And now I have been part of the heart center and part of cardiology and cardiac surgery for 23 years now.

Maggie McKay (Host): Wow. That's dedication. what's your philosophy of care? If you would start Dr. Berger.

Dr Stuart Berger: Our philosophy for care is that everything we do is focused on the child, the child and their family, and, all of our expertise and all the people who do what we do have the same philosophy. the beauty of working here in the heart center at Lurry Children's Hospital. And that's across the board, you know, physicians, nurses, nurse practitioners, administrators, and I would add to that, that everybody gets equal care that it's not tiered. And it doesn't matter where you come from, what you do, what the families do, a patient with hypoplastic left heart, which is one of our more extreme abnormalities.

No matter where you're from, what part of the city you're from, where you come from outside the city, you get the same care and you get the best care that we can possibly put together across the board. And you get innovative care, because that care is changing all the time. And we have a whole group of people, nurses, physicians, nurse practitioners, who are always on the cutting edge of looking how to do things better and that's in all aspects of the heart center. So philosophy of care is that, we push very hard to give the best care to all families, all kids, no matter who you are or where you come from.

And we continue to work hard to be on the cutting edge, from a research standpoint, from a care standpoint, because in the number of years that I've been doing this, which again is more than one or two years. There have been great advances and the great advances only have occurred because of the people of the resources and we're gonna continue to get better and better. So the other part of the philosophy is care is we're really pushing the limits, so to speak and, pushing the needle to be the best we can be.

Jillian Wilken: I think Dr. Berger put it very wonderfully. I think one of the other biggest things is with all of this innovative care and the care that we provide to, our patients is that we want all kids to reach their full potential, their fullest potential. We are their supporters, we're their providers, we're their cheerleaders. We want them to reach their full potential. And we want that family to reach that full potential as well. we include the family, they are part of the medical team and we want that family to grow with the child. and we want the child and the family to be the best that they can be.

Maggie McKay (Host): Tell us about the training you've done, that makes you the expert in pediatric heart conditions?

Dr Stuart Berger: As I alluded to a little earlier, I did a pediatric, residency, which is three years. And then I did a fellowship, in pediatric cardiology, and then practice cardiology and intensive care. But I want to add to that the training never stops. I mean, the training, you know? Okay. I'll, give it away some 30 plus years, later continues to happen every day. And I learn from my colleagues in the intensive care unit, and I learn from my surgery colleagues and my interventional cath colleagues. We're always training to get better because things are always improving.

We're in innovative, we're on the cutting edge. So it never stops. And I think that training and learning on the job is what allows us to get better and ask questions. One of my surgical colleagues is doing stem cell therapy, or at least studying that and who in the world would've even thought of that even 10, 15 years ago. So that training continues and that training is what's going to continue to advance the care for this complicated group of kids that we deal with.

Carrie Alden: Yeah. And I agree with Dr. Berger. I think we are continuing to get better and better. And when I started about 20 years ago or a little bit over 20 years ago, it's vastly different than it was back then. Back then the survival rate for a child born with congenital heart disease was around 70% and now we're close to 99% of the survival rate. And so I think, with being that cutting edge center, that's always trying to learn and do better is really part of that training.

As an advanced practice nurse, I'm dual certified in both primary care as well as critical care. And I spent the first 10 years of my career in critical care, in the last 10 years now in the outpatient setting. And so that is exactly it is that you continue to get training and learn from your colleagues when you're at such a big heart center here.

Maggie McKay (Host): Does your approach to diagnosing and treating pediatric heart conditions differ from other institutions in some way, and if so, how and why Dr. Berger?

Dr Stuart Berger: I think it does only in that we have so many people on the team and it's not to say that other centers. don't have the same. So I don't want to say that we do things better or differently and better, but I think we are so comprehensive in all areas of pediatric cardiology, we have very good breath and depth. And when I say that, I mean, in imaging, interventional cath, surgery, heart failure, heart transplant. And the other thing that we do is we constantly review and talk about cases and patients, especially complex patients and things change. And, honestly, we don't always agree. But that's the beauty of the team that we have.

Everybody has a different approach, has a different area of expertise. And when we bring all those people together to help make decisions and review things and do what we think is the best for kids and families. That's a beautiful thing because that's how in this day and age we best take care of kids. And I, certainly don't mean to imply we're the only place that does it. I think we do it particularly well. And there are other places that do it particularly well. And we even collaborate with those other places with, the big centers in Boston and in Milwaukee, in Texas.

We all work together because we're all doing this for the same. to come up with the best answer and, make kids' lives better. So it may be too long of a winded, question without a specific answer. but I think we have a great approach in that we have that collaborative approach. and I think that is the beauty of, what we do and how we do it.

Maggie McKay (Host): Right Carrie, anything to add?

Carrie Alden: Yeah, I think, the key thing is really that multidisciplinary approach where we allow those people that are experts in their area. Everything from social work to nursing, to our administrative staff to really, share their expertise with families. And I think that's the unique thing of our heart center is having multiple, specialists in different areas, sharing their opinion so that we can really treat children in a holistic approach. And I think that is really the unique thing.

And I think also being part of a huge academic center that we have support from other departments, should families need that? For example, some of our complex children will need some support from our kidney team or our infectious disease team or our neurology team. And we have access to all of that, being part of Lurry Children's Hospital.

Maggie McKay (Host): You touched upon it, a couple questions ago, but I would love to know how the care for children with heart conditions has advanced from say 10, 20 years ago. What does the future hold? What does it look like? And if you are working on any research, tell us about that. Dr. Berger.

Dr Stuart Berger: I think the future is incredibly bright. The field has progressed and I think Carrie mentioned that many years ago, the mortality in general from congenital heart disease was quite high. And now it is relatively low, but it's not a hundred percent survival yet. So I think the things that have helped advance this is the super sub-specialty care, the expertise of all the people within the heart center, interventional cath people, surgeons, imaging people. And I think we don't get know what we don't know. So there will be great progress in innovation going forward.

One of my great interests and in areas of research has been in preventing sudden cardiac death in kids. and, just as an example, many years ago, we didn't recognize that kids were at risk of sudden cardiac death. And I think some of the things the teams I have worked with, including teaching CPR, putting defibrillators out in the community have saved lives over 200 lives. Kids and adults have been saved. And I think things like that and stem cell research and things going forward will, even improve things further. But that's why innovation and, research and learning what we don't know are trying to figure out what we don't know will be a big part of this. So great things to come for sure.

Maggie McKay (Host): That's so encouraging. Carrie?

Carrie Alden: Yeah, I think, what we talked about is we still continue to focus on survival, but a lot of our research is really now looking at quality of life and how these children transition into adulthood. And so I think it's great that we have such a high survival rate. But we want to make sure that we're taking care of these children for their lifetimes now. And so, that's an important aspect of care is really focusing on their quality of life and making sure, they're doing well in high school, college and transitioning into adulthood. And so a lot of the research that I do, and one of the programs I'm part of is our Cardiac Neurodevelopmental Program.

And that really focuses on all things outside of the hospital and outside of having a congenital heart defect, meaning what support do these children need in school? What support do they need, within their families and from a psychological standpoint, as well, too. Just from the trauma of, having a child that may require open heart surgery right after birth. And so we wanna make sure that we're supporting families outside of the hospital and making sure that they're not only surviving, but they're also thriving as well, too.

Dr Stuart Berger: It's a critically important part of what we do that we never even thought about years ago.

Maggie McKay (Host): Tracking them in their future?

Dr Stuart Berger: And optimizing the neurodevelopmental outcomes and looking at what we can do better to optimize the neurodevelopmental outcomes. Critically important part of what we do in a huge impact that hopefully will be able to make.

Maggie McKay (Host): Absolutely. And in closing, what gives you each hope for children with these conditions? We'll start with you, Jillian?

Jillian Wilken: What gives me hope for children with these conditions, it's something as simple as a patient or a family smile when we're seeing them in clinic. Just to know that we have, done something good, gives me so much hope we have a lot of education. We are doing a lot of research. We have a wonderful heart center that is full of a wonderful team. And to really put the focus on the quality of life and to be with these children, some of these children we're seeing them from when they were infants, we are taking care of them as they are adults. So being with them throughout their lifetime and just to see a smile on their face, gives me a lot of hope.

Carrie Alden: Since I have been doing this for a while, the nice thing is I have had that unique ability to take care of a child after they were born and now see them in college. And so I think seeing them come back and doing so well and, living with congenital heart disease is just such an inspiration to me. I think also the team is such an inspiration. Everybody here is just dedicated to patients and families and making sure that we are really pushing the needle and doing the best that we possibly can for families. And it's just such a joy to be part of that team.

Maggie McKay (Host): That's gotta be amazing, an amazing feeling to see them from birth to college. I mean, how many jobs do you get to experience something like that Dr. Berger?

Dr Stuart Berger: What gives me hope is working with people like Carrie and Jill and the whole team, both as Jill and Carrie said, we've got a group of 50 plus cardiologists, probably a total of over two, maybe 300 people now, including the bedside nurses in the C ICU. And they're all here for the same reason. They're all here because they are dedicated to making things better for kids and families. Moving the needle in terms of care, getting to maybe someday to be able to prevent congenital heart disease.

I think we would all be very happy to be put out of business, or at least to focus on other things and maybe that will occur. And so that hope of wanting to move the needle, having a group of dedicated people. And I couldn't think of a better group of 300 plus people to work with just watching what people do and how they do it gives me hope that there's a light at the end of this tunnel, for everybody and for all families. It's a pleasure to work with this team. It's an honor to work with this team.

Maggie McKay (Host): That is Amazing. What an honor to have each of you here today, sharing your expertise. We truly appreciate you your work and your time, what you do for these chldren. And it's been very educational. Thank you.

Dr Stuart Berger: Thank you.

Carrie Alden: Thank you so much for having us

Maggie McKay (Host): Learn more about the Second Opinion Program at Lurry Children's Heart Center, including appointment information at Lurrychildren's.org /PSO. Or call 1-800-KIDS-DOC. If you found this podcast helpful, please share it on your social channels and check out the full podcast library for topics of interest to you. This is Precision, Perspectives on Children's Surgery, the podcast from Lurry Children's Hospital. I'm your host, Maggie McKay. Be well.