Keeping the Smallest Failing Hearts Going
When children suffer from heart failure and all medical options are exhausted, sometimes the next option is to use mechanical support to keep their heart going. The machine that supports this is called a Ventricular Assist Device, commonly known as a VAD.
Ann & Robert H. Lurie Children's Hospital of Chicago is the home to the #1 ranked pediatric Heart Center in Illinois and offers one of the highest-volume pediatric ventricular assist device (VAD) programs in the world. Learn more from some of the leaders at that program at Lurie Children’s, Dr. Anna Joong and Dr. Michael Mongé.
Anna G. Joong, MD is a Medical Director, Ventricular Assist Device Program; Attending Physician, Cardiology, Assistant Professor of Pediatrics (Cardiology), Northwestern University Feinberg School of Medicine.
Learn more about Anna G. Joong, MD
Michael C. Mongé, MD is the Surgical Director, Heart Failure/Heart Transplant Program; Attending Physician, Cardiovascular-Thoracic Surgery; Member, Lurie Children's Surgical Foundation
Assistant Professor of Surgery (Cardiac Surgery), Northwestern University Feinberg School of Medicine.
Learn more about Michael C. Mongé, MD
- VAD stands for a ventricular assist device, which is a device that is basically a pump. It can either be a pulsatile pump, or a continuous flow pump that pumps blood through the body. It takes over the function of the heart and provides circulation to the body when the heart is going into failure.
- With the introduction of the VAD, more patients can survive until they receive a heart because the VAD helps sustain their other organs, and allows the patient to move around and meet milestones – in some cases even go to school and attend a modified gym class -- while they await transplant.
- Lurie Children’s has one of the busiest pediatric VAD programs in the country. It began in 1995 and since that time the team has supported more than 100 patients with end-stage heart failure on VAD support with over 60 taking place in the last 5 years.
- Generally the operation to place a VAD takes 5-6 hours.
Dr. Michael Mongé: It's a very exciting, time, just knowing that,, here's a patient that 10 or 15 years ago probably never have had that opportunity. And now we're, giving him the gift of life, both with the transplant and ability to support him up to transplant with a ventricle assist device.
(Host) Scott Webb: When children suffer from heart failure and all medical options are exhausted. Sometimes the next option is to use mechanical support to keep their hearts going. The machine that supports that child is a ventricular assist device, commonly known as VAD. Anne and Robert H Lurie Children's Hospital of Chicago is home to the number one ranked pediatric heart center in Illinois and offers one of the highest volume pediatric VAD programs in the world. Today, we talk with the leaders of that program at Lurie children's doctors, Michael Mongé and Anna Joong.
This is Precision: Perspectives on Children's Surgery, the podcast of Lurie Children's Hospital. I'm Scott Webb. So I wanna thank you both for joining me today. I've got a lot of questions for you. We're gonna talk about VAD and everything kind of related to it. But as we get rolling here, Dr. Joong, what's your specialty and how'd you get into it.
Dr. Anna Joong: I'm a pediatric cardiologist. I specialize in the care of children with heart failure and those who need a heart transplant. I knew I always wanted to work with kids. And at first I was actually doing the prerequisites to become a physical therapist. But I ended up deciding on going to medical school. I found a love of cardiology working in an ICU setting. I also liked working in clinics. And so really just found my way to serving this unique patient population with end stage heart failure. And so I did my cardiology training at Columbia in New York. And then I joined the Lurie Children's Pediatric heart failure and heart transplant team in 2017.
Scott Webb: Now I do always find it interesting when I get to talk to experts like yourselves, you know how you got there. So you were gonna be a physical therapist and then you end up working on hearts and saving lives. And it's just really cool. Dr. Mongé, same questions to you. What's your specialty. And how'd you get there?
Dr. Michael Mongé: And so I'm a pediatric cardiac surgeon at Anne and Robert H Lurie Children Hospital where I specialize in heart failure. And ended up in this specialty somewhat through some serendipitous events I walked into the cardiac operating room during medical school and never looked back.
Scott Webb: Yeah, that's one of my favorite words. I love the word serendipity and the movie, but that's for a different podcast. So staying with you, Dr. Mongé, what is VAD and how does it work?
Dr. Michael Mongé: VAD stands for a ventricular assist device and VAD is basically a pump. It can either be a pulsatile pump, or a continuous flow pump that pumps blood through the body. So it basically takes over the function of the heart. And provides circulation to the body when the heart's going into failure.
Scott Webb: All right. So we have a sense then of how it works. And Dr. Joong, how do you determine if and when VAD is needed for a patient, in other words, what conditions need to exist in order for them to be a good candidate?
Dr. Anna Joong: Yeah. So a VAD is needed when a patient has severe heart failure. So that's when our like typical medicines such as IV medicines are just not enough. In pediatrics, there are two main conditions where patients can sometimes have severe heart failure leading to needing a bed. The main conditions that we see are cardiomyopathy. So that's a disease that leads to a weakened heart muscle, or the other condition, being patients with congenital heart disease who might have had, for example, multiple prior surgical interventions, and then end up with heart failure and also need of ventricular assist device.
There are a couple other conditions where we sometimes consider VA support for patients with conditions known as myocarditis. So that's inflammation of the heart muscle that can be due to a virus. Sometimes we consider VA support for patients who have already had a heart transplant, but may have severe rejection or a problem with their heart transplant. But that's pretty rare.
Scott Webb: Yeah. And just staying with you. I was gonna ask at one of my questions I had coming up, are VADs only used before transplantation. maybe you can just sort of set the scene there can someone survive only with a VAD or is it always on the road to transplantation?
Dr. Anna Joong: Yeah. So there are different reasons why a patient might need a VAD. Some of the terminology that we'll use is whether or not a VAD is used as a bridge to transplant being the most common reason to need a VAD. Some patients, we may think about a VAD as a bridge to recovery. So in the example of myocarditis, where they have temporary inflammation of their heart, we may use a vet to support them through the illness, in the hopes that their heart recovers.
And then we can remove the VAD and support them with just medicines and hope that they do not ultimately need a heart transplant. So that would be the bridge to recovery paradigm. There are rare cases where you might consider VAD as a chronic type therapy. So more of a long term therapy in adults, this is known as destination therapy. It is very infrequent in pediatrics, certainly because they have much longer lifespan., and usually we're choosing VA as a bridge to transplant. And sometimes we think about VA as a bridge to decision, meaning when a patient comes in, they might be really sick.
They might need some sort of mechanical support, like a VAD, more emergently. And we're not quite sure is this something that could recover or is this something that needs to go on to transplant? And so in that case, we would consider that as a bridge to decision.
Scott Webb: That's interesting. Great. It's a bridge in some form, right? Metaphorically, and literally I guess, and Dr. Mongé, is that one of the benefits of the VAD is that it can be used as a bridge while decisions are being made or on a sort of a longer journey towards transplantation?
Dr. Michael Mongé: Yes that is the benefit of a VAD, is it serves as a bridge and that it provides the, cardiac output that the patient needs while they're waiting for either recovery or heart transplantation. And so, it preserves the other organs, the kidneys, the liver, the brain. And it provides cardiac output to the other organs to keep the patient in as best shape as possible prior to going into a heart trans.
Scott Webb: Yeah. And staying with you, maybe you can discuss a little bit how it improves the patient's condition. It sounds like it really does.
Dr. Michael Mongé: It really does in that it allows probably 10 to 15 years ago. These patients would oftentimes require, a breathing tube to be in place and to be sedated for months on end waiting for a heart transplant. And unfortunately, not all patients would make it to heart transplant because their heart, would go into such severe failure. Now with the ventricular assist device we can maintain the other organs in great shape allow the patient to be up moving around, interacting with their parents, caregivers and meeting their milestones while they await heart transplant. And we can support children, and have supported children up to in over a year while they await heart transplant.
Scott Webb: Has that been your experience Dr. Joong, that it really helps to meet those milestones?
Dr. Anna Joong: Absolutely. You know, as Dr. Monge was saying, one of the key factors of the VAD is that it's really restoring that circulation and it can do so in a way where they no longer need the breathing tube and can be up and hopefully running around. If they're older kids. We have the only pediatric outpatient VAD program in the state of Illinois. And so some of the older children, for example, teenagers, or even children in elementary school, they can get a type of VAD where most of the hardware is all inside the body. And once they recover from surgery, we actually discharge patients on VAD support, with that particular type of device. And have sent children to elementary school and going back to participating, for example, in a modified gym class, or even going back to their marching band.
Scott Webb: Oh, that's so cool. when you think about developing the treatment plan for patients, I'm sure it's interdisciplinary, multidisciplinary, you know where medicine is today, but maybe you can take us through that a little bit. What's the process for making those treatment plans for children?
Dr. Anna Joong: It really is a team approach so at the core of our VAD program is our VAD coordinator, which is Nora Hammond. And she's a nurse practitioner that specializes in taking care of pediatric VAD patients. We work really closely with the cardiac ICU, with lots of team members, with physical therapists, occupational therapists, neurologists, hematologist, CB surgery, the heart transplant team. Really the list goes on and on. And one of the key parts that we do. We specialize here at Lurie Children's, is coming up with a treatment plan ahead of time.
So we have what's called a VAD watcher list, which means that we try and identify patients before we think that they're gonna need a VAD so that we can be prepared. And that means not just preparing on the team side of things in terms of making sure we have the right equipment available for that specific patient, but we also prepare the families. So we sit down and meet with the families ahead of time. Talk to them about that. It might be a possibility that their child may need a VAD in the future and help prepare them for what may come.
Scott Webb: That's really cool. I mean, just to. Or medicine is today versus 10 or 20 years ago. And the ability to be proactive instead of sort of reacting to things and really being prepared for the let's call it the worst case scenario. And Dr. Mongé, maybe you can speak to that a little bit, the multidisciplinary team and teams there that work together, I'm sure it helps to develop those plans, right?
Dr. Michael Mongé: Absolutely. Having the multidisciplinary team and each of the specialists, providing their own perspective on each individual patient what is important in their goals of care, is helpful in forming multidisciplinary, treatment plan, both for the patient and also involving the parents in that decision making as well.
Scott Webb: Yeah, I'm sure the parents, are very involved and wanna be involved. Of course, as a parent myself, I can only imagine, what parents and families go through as they consider their options, consider VAD transplantation and so on. And maybe you can just talk a little bit about the approach at Lurie Children's in terms of VAD, what makes it different or special? And, if it is different and special, let's say, why is that?
Dr. Michael Mongé: I do think we have Somewhat of a standardized approach to implants of the ventricular assist devices, but each patient's anatomy and physiology is different, especially in children with congenital heart disease, where they have competing physiology between their systemic and pulmonary circulation. And very few centers, are able to support these children with a ventricular assist device as they await transplantation. Whereas our center has come up with both novel cannulation strategies to connect these smaller patients to the ventricular assist devices, in addition to having expertise in managing these patients postoperatively through a multidisciplinary team.
Has allowed us to successfully support these children to transplantation and I really think that's what sets Lurie apart is the multidisciplinary approach we take and also the innovative approach to each individual patient. That allowed us to support, children that have been referred from other centers, to the inability to support them there.
Scott Webb: Yeah. And I know that you were doing surgery, shortly before we recorded this podcast. So it's gonna be fresh in your mind, right? Maybe you can take us through it a little bit to take us through the surgery as best you can give us a sense of what goes on in the operating room.
Dr. Michael Mongé: It takes about an hour to prepare a patient for an operation by the cardiac anesthesia service. Addition to meeting with the nursing team and the profusion teams who all participate in the surgical operation. And then the ventricular cyst device , is most commonly in children is quite through a sternotomy incision. Where we open the sternum and then we oftentimes will go on the heart lung machine or the cardiopulmonary bypass machine. That temporarily takes over the function of the heart and the lungs where we're able to put the implant, the pump, into the patient.
Frequently, in smaller patients, we will just place tubes or cannulas, into the ventricle and then into the aorta, which is the main blood vessel coming off the heart. And then those tubes would be tunneled out through the abdominal wall, where they would then be connected to a pump that sits outside the body. And then as we wean from cardiopulmonary bypass, we transition to ventricular assist device support. In older children we are able to take the pump, and put that directly into the ventricular cavity of the heart, and then graft a piece of tubing is connected to that pump and then brought up and connected to the aorta.
And then just a small drive line or power supply line is tunneled out through the patient's, abdominal wall and then connected to a power supply. The operation in general takes about four to six hours.
Scott Webb: Dr. Joong, tell me about your philosophy of care. We've talked about multidisciplinary teams and being patient specific there at Lori, but maybe you can take us through, your approach to care.
Dr. Anna Joong: Our philosophy here at Lurie Children's is that the child is the center of everything that we do, and getting to know the individual child, who they are as a person who their family is. It really drives everything that we do in terms of caring for them. For example, if we learn that it's a five year old boy who loves to play T-ball, then when we're thinking about their recovery and we're working with the physical therapist, then they will incorporate T-ball into that patient's recovery. And I find just really making sure that the child is at the center of all the decisions that we're making that you can't go wrong.
Scott Webb: Well, that made my day having had two kids who played T-ball and played baseball and my daughter played softball. Just thinking that you're thinking about that, like, Hey, this kid loves to play T-ball. We need to make sure that we can get them back on the field that's so awesome. Wanted to ask you, Dr. Mongé, when you think back about your training and how you got where you are today, maybe you can just tell us a little bit about that training, folks, you worked with experts you worked with and how you got where you are today and how that all sort of informed how you do these procedures.
Dr. Michael Mongé: I had the opportunity to do my adult surgery training at Stanford University where Norm Shumway did the first, heart transplant in the United States and is really the father of heart transplantation. In addition to Stanford was also the first institution that used a, VAD or ventricular assist device as a bridge to transplantation many years ago. So I wa s fortunate to work with surgeons that had a lot of expertise in both transplantation and ventricular assist device support. At the time there was really limited options for children.
And when I moved back to Chicago and began my practice at Lurie, we were starting to adopt some adult ventricular assist devices and modify them to support pediatric patients. And then really with, the addition of Dr. Joong coming out of training and having a lot of experience, where she was with pediatric ventricular assist devices. We were able to formulate a multidisciplinary team and really focus on developing a ventricular assist device program specifically for,, pediatric patients, and the rest is history.
Scott Webb: yeah. As we've referenced a couple times, children are smaller, right? They're different than adults. And so to have those of you who specialize and the multidisciplinary team working to help these children and families is amazing. And Dr. Joong, Dr. Mongé was mentioning earlier, the surgery is about four to six hours, and we've talked about getting the T-ballers back out there, but generally speaking, what's the recovery typically like for children?
Dr. Anna Joong: We know that the sicker you are going into an operation that, the harder the recovery can be afterwards. And so, part of our process here at Lurie Children's where we try and really catch patients before they get too sick, going into the operation that can help their recovery a lot. So for example, if the patient is still Breathing on their own before going into an operation, then we would hope that after recovery we're able to get the breathing tube out fairly quickly. So sometimes after getting a bad surgery, they may have the breathing tube out the same day or the next day.
If things are going well, we start to see improvement in their kidney function, in their liver numbers within days. Kids are very resilient and they may be up and walking around even within just a few days of getting their VAD implanted. In patients that are on the trajectory to go home, so the ones that have the types of VADs that can be discharged from the hospital, our goal is to discharge a patient within two to four weeks of having the VAD implanted. And that includes the time that it takes to really train the family and those that will be caring for the child at home before leaving the hospital.
Scott Webb: Yeah, right. It's not just the kids. It's the families, it's everyone everyone caring for those kids and maybe getting them back on the T-ball fields. And Dr. Mongé I know this is a heavy question, a loaded question, but what does it feel like to place such a crucial role in keeping these young patients, these children alive?
Dr. Michael Mongé: It really is a truly rewarding experience. And as with children of my Own, to watch some of these children come in extremely sick. And I think one of the most rewarding aspects is to see these kids after they've been discharged from the hospital out, there's a playground right across the street. And to have seen a few of them at the playground in regular clothes, running around plane as if they'd never had a, an operation or a transplant. That truly is a uplifting experience. Even today, we have a, six month old, who's been on a ventricular assist device for the last four months so that was placed when he was a two month old..
And we just accepted a heart for him. So we'll be transplanting him later today. And it's a very exciting time. Just knowing that here's a patient that 10 or 15 years ago. Probably never have had that opportunity. And now we're giving him the gift of life, both with the transplant and ability to support him up to transplant with a ventricle assist device. At six months of old, he's just starting to sit up now and meeting some of those milestones that you would expect from a six-month-old. And that just brings a smile time face when walking around, seeing these patients, doing so much better after having a ventricular assist device placed.
Scott Webb: Well, just hearing that actually brought a tear to my eye. Thinking about a six month old, you know, I know for my own kids, they can't remember things that happened when they five or six years old. So I'm thinking this six month old will never know other than his parents and family and perhaps follow ups down the road. They'll never know the role that you all played there at Lurie Children's to save their lives. I'm sure Dr. Joong, like that's a big responsibility, right?
Dr. Anna Joong: It is a big responsibility and it's so rewarding. I had clinic this morning where I saw one of our former VAD patients. She's now thriving after her heart transplant. And you're right when she's older, she's not gonna remember those days of being on VAD support, but she was giving out hugs, to the whole team this morning and just running around and thriving.
Scott Webb: It's truly amazing. I feel so fortunate to speak with the experts at Lurie Children's and just know that every day you go to the office, so to speak, there's a good chance. You're gonna save a child's life. And they may not remember, but their families will and they'll remind them. Dr. Mongé, I'm assuming Dr. Joong would be one of the people, but where do you turn when you have questions about a particularly challenging case?
Dr. Michael Mongé: When we have questions, we often turn to each. Here at Lurie, to the entire group of surgeons and cardiologists, in addition to reaching out to our surgical and heart failure, cardiology experts at Northwestern, where we have a close relationship, with them and frequently will help participate in the management of these patients together. And we also participate in the action learning network, which is a national collaboration of pediatric ventricular assists device programs, that have come together to improve outcomes in pediatric, heart failure patients.
Scott Webb: Yeah, and good for those of us who live and work in and around Chicago. Nice to hear Northwestern and Lurie Children's collaborating to save lives and work with families. Really good stuff. Dr. Joong, we think about. 10 20 years ago. I think we've kind of touched on this a little bit, but we're dealing with these smaller patients dealing with these children, how have things changed? How has the technology, and the surgical procedures advanced and what does the future hold?
Dr. Anna Joong: Yeah. So one of the biggest changes over the last decade in addition to having more devices available at our fingertips is really what Dr. Mongé alluded to, which is the collaborative network called ACTION. It stands for the Advanced Cardiac Therapies Improving Outcomes Network. And this is as he mentioned, a national QI collaborative of pediatric VAD programs seeking to improve outcomes of children with heart failure and children who need ventricular assist devices. And because in pediatrics, the numbers are really small in terms of at each individual hospital there may not be that many pediatric VAD implants per year.
But we've learned that if we pool our data together, that we can learn a lot more from each other than if we all worked in silos. And so their motto is to share seamlessly and steal shamelessly. And we really worked together to share protocols. Lessons learned. Many of us have each other's cell phone numbers and we'll call each other up with cases that we might need help with. And that's, I think the future of medicine, in addition to moving forward with the technological advances and making smaller devices. It's also really important that we work together and learn from our colleagues across the country.
I guess I could add an example to that through the Action Network, the stroke rate for one of the devices historically used to be around 30% of patients may suffer a stroke on one of the particular VAD devices. And Through the collaboration network. We have been able to decrease that number down to 12% of patients and here at Larry children's, we have an even lower stroke rate.
Scott Webb: Dr. Mongé, any particular research that you're working on that you want to share with listeners?
Dr. Michael Mongé: We'll be participating in a national trial to evaluate a implantable continuous slow device for pediatric patients. The Jarvic 2015 and that trial should start in the next year. And so very excited about the opportunity to participate in that trial. In addition, we are looking at ways to optimize the ability to provide for myocardial recovery and to explant of ventricular assist devices.
Scott Webb: Yeah, exciting to be sure. And I could talk with you both all afternoon. This has been so educational and heartwarming, no pun intended. But as we wrap up here, Dr. Mongé what inspires you about the work that you do?
Dr. Michael Mongé: I think it really is seeing the patients get better and have a smile on their face and just live, just be kids again. As you had mentioned, these kids will probably not remember any of this. And I think that's just wonderful that we were able to provide the opportunity here to meet their milestones, to be a child despite waiting for heart transplant and then to move on with their lives after receiving a new heart or having the VAD explanted. I think that's really what inspires me is just watching these children get better and go on and have a normal childhood.
Scott Webb: Final question for you, Dr. Joong, what inspires you the most? I mean, we've talked about so many inspiring things today, the present the future, kids being kids playing T-ball and all of that, but what inspires you?
Dr. Anna Joong: That's easy to answer. It's the patients for sure. The patients inspire me every day. When you see a toddler who is laughing and running down the hall while tethered to VAD support with like a team of therapists and nurses that are trying to chase them down, it really is quite a sight and it puts life into perspective. And they really inspire me every day.
Scott Webb: That's perfect. Yeah. I can just picture that. Kids are kids, doesn't matter if they're tethered to things and people are chasing them, they're just gonna be kids. And that's what makes them so awesome. So thank you both. This has been, really inspirational, I think is the word today, as it often is when I speak with the experts at Lurie. So thank you both. And you both stay well.
Dr. Michael Mongé: Thank you so much.
Dr. Anna Joong: Thank you very much.
Scott Webb: And visit Luriechildrens.org/heartcenter for more information or to make an appointment. And if you found this podcast helpful, please share on your social channels and check out the full podcast library for additional topics of interest. This is Precision: Perspectives on Children's Surgery, the podcast from Lurie Children's Hospital. I'm Scott Webb. Stay well.