High-Risk Pediatric Heart Transplants with Drs. Michael Mongé and Philip Thrush

The Heart Transplant Program at Lurie Children's is one of the largest and most comprehensive heart transplant programs of its kind in the country. Just a few years ago, it reached a major milestone of completing its 400th pediatric heart transplant. The program's 40-person cardiovascular thoracic surgery team makes the program uniquely equipped to handle the most high-risk cases with exceptional care. In this episode, Dr. Michael Mongé, Surgical Director of the Lurie Children's Heart Transplant Program and Dr. Philip Thrush, Medical Director of the program, discuss how their team is uniquely equipped to take on high-risk pediatric heart transplantation patients, who are often turned away at other hospitals.

“That's an experience that never gets old, and you even after being involved in over 250 heart transplants: watching that heart wake up for the first time, then knowing what that means for that patient. They're able to leave the hospital and go out and live their life outside the hospital. It never gets old.”

Dr. Michael Mongé
Surgical Director, Heart Failure/Heart Transplant Program
Attending Physician, Cardiovascular-Thoracic Surgery
Associate Professor of Surgery in the Division of Cardiac Surgery, Northwestern University Feinberg School of Medicine

Philip T. Thrush, MD“This job is filled with the highest highs and the lowest lows, but one of the highest highs is being able to tell a patient and a family, especially if they've been waiting in the hospital for months, that we finally have a good heart for them.”

Dr. Philip Thrush
Medical Director, Heart Failure/Heart Transplant Program
Attending Physician, Cardiology
Associate Professor of Pediatrics in the Division of Cardiology, Northwestern University Feinberg School of Medicine

Show Notes

  • Having achieved a reputation of excellence, the Heart Transplant Program at Lurie Children’s receives patients from all over the world, many of whom have been turned down by other heart transplant programs.
  • The program has established excellent surgical outcomes with a 100 percent, 30-day survival rate.
  • A patient can be deemed high-risk due to technical challenges of the transplant, physiological derangements or having had previous heart surgeries.
  • Being a highly sensitized patient can also make one high-risk. This means that they have pre-formed antibodies that could cause the patient to reject the transplant. When this happens, doctors can attempt to desensitize the patient to these antibodies either before or after the transplant has taken place.
  • A patient may qualify for a heart transplant if end-stage heart disease is present, if other treatments have been unsuccessful, and if there’s a good chance that transplantation will be successful. This is decided after a thorough evaluation by a team of specialists.
  • During the heart transplant evaluation process, a patient and their family can expect an initial cardiology assessment and a rigorous review of their case by a multidisciplinary transplant committee to decide on listing and care strategies. While families are awaiting transplants, the goal is to ensure and maintain the highest health possible.
  • After transplantation occurs, special care is taken to ensure the success of the transplant, treating any infections or diseases such as post-transplant lymphoproliferative disease or chronic kidney disease, and evaluating the overall health of the patient.
  • Dr. Mongé and Dr. Thrush can see patients five, 10, or even 15 years after their initial transplant, helping the patient transition to an adult cardiology program.
  • As part of being on the cutting edge of research, Drs. Mongé and Thrush were recently part of a trial evaluating an immunosuppression regimen that has proven to be beneficial in the adult world and will hopefully benefit the pediatric population as well.
  • In addition to larger research projects, the program is looking at long-term goals of transplantation tolerance and providing for prolonged graft survival through smaller quality improvement projects within Lurie Children's Hospital.


[00:00:00] Erin Spain, MS: This is Precision, Perspectives on Children's Surgery from Ann and Robert H. Lurie Children's Hospital of Chicago. I'm your host, Erin Spain. On this podcast, we introduce you to surgeons at one of the country's most renowned children's hospitals to find out how they're transforming pediatric medicine. The heart transplant team at Lurie Children's is one of the largest and most comprehensive heart transplant programs of its kind in the country. And just a few years ago, reached a major milestone, of completing its 400th pediatric heart transplant. The program's 40-person cardiovascular thoracic surgery team makes it uniquely equipped to handle the most high risk cases with exceptional care. Here to discuss this very special category of patients and high risk pediatric heart transplantation are Dr. Michael Mongé, Surgical director of the Lurie children's heart transplant program and Dr. Philip Thrush, medical director of the program. Welcome to the show, both of you.

[00:01:08] Michael Mongé, MD: Good afternoon, Erin. Thanks for having us.

[00:01:09] Philip Thrush, MD: Thank you.

[00:01:10] Erin Spain, MS: In 1988, surgeons performed the state's first heart transplantation on a pediatric patient here at Lurie children's. And since that time, this program and team has really grown. Dr Thrush, can you tell me about this growth and the reputation that the program has today?

[00:01:28] Philip Thrush, MD: Our program has established this reputation of excellence with high risk transplant. It means we're no longer just transplanting children and young adults from the Chicago area or even just the state of Illinois. It's that patients are now coming from out of state, and not just the surrounding states, but you know, from several states away as well as international patients. And I think those populations present unique challenges that we didn't always have to face in the past. And I think part of that is what has led to us recognizing what resources and what team members we need in addition to just the medical team and just the surgical team to take care of these patients. And to provide the care that they need and they deserve, whether it be in this state or several states away.

[00:02:13] Erin Spain, MS: Tell me, what makes a case particularly high risk? How was that defined, Dr. Mongé?

[00:02:19] Michael Mongé, MD: A patient can be considered or deemed high risk for several reasons. One could be the technical challenges at the time of transplant from multiple prior operations and the risks associated with re operations from scar tissue that has developed. There's also physiologic derangements that these patients frequently bring to the operating room due to the failing heart and the failure of other organs that may go along with that. And then frequently these patients and their families have been through multiple prior operations. And so also from a psychosocial standpoint, it's also important to make sure that they are prepared to undergo this journey.

[00:02:58] Erin Spain, MS: One category of high risk patients is a highly sensitized pediatric heart transplant patient. Tell me more about what a highly sensitized patient means and how that impacts the work that you're doing.

[00:03:11] Philip Thrush, MD: So, a highly sensitized patient is one of the things that makes a patient high risk for transplant. And what that means is that they have performed antibodies to the HLA markers on other people's cells. And so those markers are what make us who we are, and they're unique for each individual. And the more of those markers that you can match between a donor organ and a recipient for a transplant, the lower the risk of rejection. We generally consider a highly sensitized patient, someone whose blood tests demonstrate that they have antibodies to 10 percent or more of the population, and we call that test a panel reactive antibody, and it's a way to assess what antibodies are present and strength those antibodies are. So for us, there are a multitude of things in a patient's history that might make them, a sensitized patient, so prior exposure to blood products, prior exposure to mechanical support, prior congenital heart disease surgery, and the materials used for that, all are things that might lead someone to develop these antibodies. And the more antibodies you have and the stronger those antibodies are, the higher your risk for antibody mediated rejection after a transplant. And so it just raises the stakes of the transplant when we do a transplant for those patients.

[00:04:32] Erin Spain, MS: So tell me about some of the options that your program offers to help these patients.

[00:04:37] Philip Thrush, MD: There's really two options. One is to attempt to desensitize them to clear these antibodies pre transplant. And one is to address these antibodies in the post transplant period. And there's pluses and minuses, but the concept is really the same either way. It's trying to clear the circulating antibodies that are there and to then address the immune cells, whether they be plasma cells or B lymphocytes that are producing those antibodies to decrease the production of antibodies after you clear the circulating antibodies. So we have a multitude of tools in the toolbox to try to address this. I think that the biggest challenge for us is deciding how aggressive to be upfront. And the downside to this is that all the things that we use to address these antibodies, potentially can put patients at risk for infection. And so if you're someone who is waiting for a transplant, getting a serious infection while you're waiting is something that puts things on hold. And so we have to try to balance the risk of making somebody inactive on the waitlist with our therapies versus the risk of those antibodies. And I think we have a really robust history of dealing with these antibodies even after transplant. And so for us, either approach I think is reasonable, but I would say, even if we can't clear those antibodies and someone goes into a transplant in a sensitized manner, that doesn't necessarily impact our ability to take care of them. It just means we have to be more aggressive in terms of our immunosuppression in the post transplant period.

[00:06:03] Michael Mongé, MD: And excitingly, we have received grant funding and are in collaboration with researchers on the undergraduate and medical school campuses to evaluate inducing tolerance using thymic tissue, and that research should be getting off the ground shortly here.

[00:06:19] Erin Spain, MS: That really underscores all of the preparation that you do for these heart transplants. There's the planning, there's evaluation, there's research happening in the background. And there's also very quick decision-making that's taking place. But before all of that, you have to determine if a child is a candidate for a transplant. Take me through that process.

[00:06:40] Michael Mongé, MD: It really is a multidisciplinary approach to these patients, each specialty emphasis with regards to whether patients deemed a transplant candidate and so each patient is evaluated from each specialty's perspective and then we all gather to discuss the patients and concerns any of the different specialties may have and how we can work through those concerns to provide top quality care and good outcomes for these patients. But each patient is taken as an individual case and evaluated by a multidisciplinary group, being given the risks and benefits of the transplant.

[00:07:15] Philip Thrush, MD: I would totally agree with what Dr. Mongé says. I think the important part about this is that it is a very standard yet flexible process. So there are certain things that every single patient needs to go through as part of that evaluation. And we do that in some sense because some things are required by the United Network for Organ Sharing, but there are some things that we have decided as a program are important for everyone, and it's hard to decide who will and who won't need a certain subspecialty. But I think there's also the flexibility within the transplant program to look at each individual patient and identify unique factors from their past medical history or past surgical history that warrant additional evaluation above and beyond what we might do for somebody. An example, not every single transplant patient may need a more thorough evaluation from an immunologist, But underlying syndromes or significant medical issues that carry an increased risk of immune deficits or immunologic issues that warrant further evaluation so that we can know how best to take care of them after a transplant. The alternative to that is something like our palliative care team, which is super robust. And I think we're one of the few programs in the country who probably has a transplant cardiologist who is both a cardiologist and a palliative specialist. But we feel that it's necessary for the palliative team to meet with every single patient, not because of the services that they necessarily provide at end of life, but they also do a phenomenal job of helping families process some of those decisions and thinking through things on a different level than maybe we do from the medical side. And so for us as a program, we've decided that universally, they all should be approached and evaluated by those programs. I think the other simplest way to think about it, when I tell families we're going to go through this evaluation, the two things I tell all of them is, this is like flipping over all the rocks. Like, we don't want to be surprised at the time of transplant, right? So we want to know what's under every single rock, which is why we've got to evaluate every single organ system, and it's not necessarily figuring out if someone is a transplant candidate or not a transplant candidate. There are obviously things that will preclude a patient from being a transplant candidate, but those seem to be fairly few and far between in the pediatric world. To me, the evaluation is how do we best understand this patient so that we can provide the best post transplant care and peritransplant care for that patient. That is, I think, imperative. No two patients are the same. And I think as we have become more facile with these high risk transplant patients, each transplant patient seems to have some unique risk factor that we have to assess one way or another. It's all about doing our due diligence up front so that we can have the best outcome on the back end.

[00:09:58] Michael Mongé, MD: Although we have excellent outcomes here at Lurie with 100 percent, 30-day survival and, over 95 percent three year survival, which far exceeds the national standards with each individual patient, there still is lot of stress as physicians making sure that that patient does well and that we've done everything to support them and their family through this process.

[00:10:18] Erin Spain, MS: This team that you have assembled really helps you to take cases that other hospitals can not take. Dr. Mongé, can you tell me about that and what it's like to be able to help these families that have been turned away at other places?

[00:10:32] Michael Mongé, MD: I think it's wonderful to have the opportunity to give these families hope when they've been potentially told that there's no other options for their child. It's just wonderful in situations where we are able to offer transplant to those patients and their families. Dr. Thrush, you are often the person who is able to tell a family that you've accepted a transplant offer for them. What's that like?

[00:10:52] Philip Thrush, MD: It's such an awesome experience. This job is filled with the highest highs and the lowest lows, but that is definitely, one of the highest highs is to be able to go tell a patient and a family, especially if they've been waiting in the hospital for months, that we finally have, you know, a good heart for them. It's just amazing to see how well the vast majority of them recover and especially, you know, these babies with congenital heart disease and young children with congenital heart disease who, you know, have been cyanotic their entire lives and they go into the operating room, cyanotic and blue, and they come out pink and, it's just such a cool experience to see them thrive afterwards. There's nothing quite like it.

[00:11:29] Erin Spain, MS: And Dr. Mongé, you have such an important role in this. You are the person who is performing the transplant, and you're able to place this new heart in sometimes a very small baby and watch them regain life right in front of your eyes. What's that experience like for you personally?

[00:11:46] Michael Mongé, MD: That's an experience that never gets old and you even after being involved in over 250 heart transplants. Watching that heart wake up for the first time, then knowing what that means for that patient. They're able to leave the hospital and go out and live their life outside the hospital. It never gets old and it's always a sort of mind blowing experience to watch the heart, wake up again and start beating again.

[00:12:08] Erin Spain, MS: You mentioned that some of these families are waiting for months in the hospital. Walk me through what parents might expect from their very first appointment with the team to the day of transplantation and then after.

[00:12:20] Philip Thrush, MD: It probably is somewhat different assuming they're either an existing patient in our program or a patient who is coming to us for the first time from another institution. In general, for someone who is coming to meet us for the first time, the first appointment is usually a fairly typical cardiology visit with all the usual testing, echo EKG, and I like to use that first appointment to actually lay out for the family what the process of the evaluation is and what to expect as part of that evaluation, including who they're going to meet with and what testing that's going to involve. And that's a little bit different for each person. And so that first visit for the vast majority, it is going to be in the clinic, but there are times, especially for out of state patients, where that first visit may actually be a virtual visit, to kind of outline what to expect in terms of waiting and everything so that they have realistic expectations before they come to Lurie for the first time. As they go through the evaluation, if it's done in the clinic setting, it's usually done over one or two days with meeting somewhere between 10 to 15 subspecialists, and that may end up including heart catheterizations, exercise stress testing, additional imaging, like CT scans, and then a significant amount of blood work. If they don't need to be admitted at that point, they would go home and then we go through that evaluation process as a transplant team doing a committee review where everyone who is part of the team then has an opportunity to weigh in on their part of the evaluation, and what their concerns are, if they have any. Then ultimately, we make a decision about how best to proceed with listing, if that's the determination that they should proceed with a heart transplant, and deciding should they be admitted or should they continue to be followed as an outpatient. And so, if they're going to be followed as an outpatient, that process could be months. And the best way to think about it is they're going through their regular cardiac follow up maybe a little bit more frequently, but the transplant listing essentially serves as a safety net underneath that. And then part of every clinic visit becomes an evaluation. Are we still okay to be home or do we need to think about coming into the hospital and being more aggressive with continuous intravenous medications and the such? If the determination then is to bring them into the hospital, whether it's after their committee review or later on down the line, in some ways, the hope is to get to a state of boring, a state of we come and see you every day and we don't have to make lots of changes. And that's because you're in a really good state, you're well supported and we're just waiting for a call with an offer, and we're making small changes here and there. And so during that time, The kids are going to school. They're doing occupational therapy, physical therapy, music therapy. They are doing sometimes activities with other kids in the unit, when there aren't infectious concerns that prevent that. But the goal is to have as normal of an experience in the hospital as possible and to be able to do as many things as possible and continue to grow and for younger kids to meet developmental milestones. And I think that's the hard part is it's really challenging to tell a family how long that that wait is going to be. And for some patients, it's a few weeks. And then for some patients, it can be a few months or even six months or more, depending on the size of the kid and certain factors that weigh into that. Then it becomes a process of how do we just keep that patient in as good a state as possible with periodic screening, with echoes and other lab tests, and making small changes and hopefully no big changes is the goal. But again, Our job is to be ready for those big changes, and I think that's where, you know, as they're in the hospital, if we have to escalate therapies, whether it be additional IV medications or it is escalating to mechanical circulatory support, I think that's where our program has the expertise to know not just when to pull that trigger, but what is going to be the next best support for that patient to help get them to transplant?

[00:15:56] Erin Spain, MS: Is there anything special that you do to connect with these families or any approach that you take to really create a relationship with them during this trying time?

[00:16:06] Michael Mongé, MD: As a parent, I try and put myself in the position of a patient's parents to realize when I'm stressed out at home about trying to get my kids out the door and to realize what these families are having to go through. It helps put things in perspective, and also try and remain a bit of a kid and put myself in the position of the child that's undergoing the transplant or having to be in the hospital for six months or more, and really trying to develop a relationship with them.

[00:16:34] Erin Spain, MS: So patients may be under your care for many weeks or months before the transplant. But they are under your care after the transplant as well. You see these patients again in five, 10, or even 15 years after the transplant. Tell me about that.

[00:16:48] Philip Thrush, MD: Obviously we see these patients, regularly, on the cardiology side after transplant. I tell every family, I know that they are going to have some speed bumps along the way. And some are going to be bigger than others, but in general, we will get to a point where things become a little bit more status quo, a little bit more predictable. Part of why our follow up is so intense initially. When our patients leave the hospital, it's usually weekly clinic visits with our team for the first four plus weeks and then every other week and then monthly that every six weeks until they get to their first year out from transplant. And then we still see them every three to four months, even after the first year. For us, I think that's part of the reason why we have such a big team on the medical side of this is that there are a lot of needs for these patients and every visit becomes a balance of taking care of the heart and trying to balance that with the side effects of the medication. So things like infection, post transplant lymphoproliferative disease, chronic kidney disease. And so, you know, what we're trying to do is to mitigate some of those risks as we get further out from transplant. But our expectation is that we're going to follow these transplant patients for a really long time. So for an infant, I expect them, more than half of them, to have their transplant 25 plus years, especially if they survive the first year after transplant, which virtually all of them do. Even for a high risk congenital heart disease patient who's had multiple operations and Fontan palliation the average graft survival , for that patient who gets transplanted in their teenage years is probably still 14 to 15 years. So the expectation is that the vast majority of our patients are going to follow with us all through their childhood into their young adult years and then make a transition to an adult cardiology program. But the hard reality is that all of them at some point are going to need a re-transplant. You know, as good as things have become, they aren't perfect and we know a transplant's not going to last forever. And I hope the data that I quote to families is wrong. It's historical data from the last 30 years. And we know every decade has gotten better. So I hope that 10 years from now, that what I'm telling families is a little bit better and 20 years from now, it's even better because we'll have more followup , but there's no doubt in my mind that at some point they're going to come back to me, Dr. Mongé?

[00:19:00] Michael Mongé, MD: I think it's important for families to understand is that they're really trading one chronic medical condition for another chronic medical condition. It's really a marriage between the patient and their families and the Lurie Children's Transplant Team, and that Dr. Thrush and his team continue to see these patients, multiple times a year throughout their infant childhood and teenage adolescent years all the way up into their adult years. And then being affiliated with an adult hospital, Northwestern Medicine, we do have the ability to offer these patients re transplants at an adult hospital with congenital, cardiac surgeons, myself, involved in those cases. As Dr. Thrush had mentioned, when I first started training 15 years ago, the average expectancy of these hearts was about 10 years, and now we're up to 14, 15 years, so it is continuing to improve, and the hope is with newer technologies we will be able to even improve upon that.

[00:19:53] Erin Spain, MS: And research plays an important role in changing the future of this field. Can you tell me a little bit about any other research taking place to look forward to that is happening within Lurie Children's and Northwestern?

[00:20:05] Philip Thrush, MD: We were recently part of the Teammate Trial, which was evaluating a different immunosuppression regimen , that has shown benefit in the adult world, and was then, trialed in the pediatric heart transplant world in a multicenter, randomized trial looking at our gold standard immunosuppression versus this newer approach. For us, it's important as a big program, not only to do these high risk complex transplants, but also to be on the cutting edge of the research and on the forefront of trying to advance the field. You know, like Dr. Mongé said, we went from 10 year survivals to 15 plus year survivals. And, and the way that that happens is the research. And so, that's merely one example, is we move forward in the world of transplant, obviously, as Dr. Mongé mentioned earlier, thymic tissue transplantation to try to induce tolerance is probably one of the next big arenas to tackle. The goal really is to get to a point where you can minimize immunosuppression and induce some degree of tolerance. The benefit of that is some of the things that limit survival after a transplant are the complications of the medications that we use. And so, trying to get to a point where you need less immune suppression, less risks that come with the medications is only going to be advantageous. And so I think that is a huge step forward. And it's really crucial to have a partnership with Northwestern University and the basic researchers to help kind of bridge the gap from the bench to the bedside in terms of what we do. You know, in addition to that, it's learning from our 30 years of experience too, right? So it's looking at the 400 plus transplants that we've done, identifying trends and identifying risk factors for different complications and different post transplant manifestations to try to address them earlier and hopefully minimize the impact of those complications.

[00:21:54] Michael Mongé, MD: In addition to those larger research projects that Dr. Thrush had mentioned, looking at the sort of long term goal of inducing tolerance and providing for prolonged graft survival, we also have smaller quality improvement projects going on within Lurie Children's Hospital in that now that we have established excellent surgical outcomes with 100 percent 30 day survival, now we have quality projects looking at more nuanced findings like kidney function post transplant, working towards getting these patients extubated sooner, decreasing infectious risks, which the excellent survival outcomes have allowed us to now focus beyond that, also improving the overall quality of the patient's life as well.

[00:22:33] Erin Spain, MS: Well, it sounds like we really are on the cusp of some really interesting developments in pediatric heart transplant and excited to have you two at the head of this team. So thank you so much for your time today, Dr. Michael Mongé and Dr. Philip Thrush, I appreciate your time.

[00:22:49] Michael Mongé, MD: Thank you, Erin, for this opportunity.

[00:22:51] Philip Thrush, MD: Thank you so much. It's an absolute pleasure.

[00:22:53] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit LurieChildrens.org.

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