Deborah Howell (Host): Heart transplants are a life-saving and life-changing intervention that Le Bonheur provides to children each year. But how do doctors determine if a child needs a heart transplant? And what's the process of recovery like? Le Bonheur physicians, surgeons, and staff are here with us today to discuss this delicate process. Welcome to you, Dr. Ryan, Dr. Boston, and Ashley.

Dr. Kaitlin Ryan: Thank you for having us.

Ashley Hilsabeck: Thank you.

Dr. Umar Boston: Thank you for the invitation.

Host: Dr. Kaitlin Ryan is a cardiologist here at Le Bonheur. Dr. Ryan, how do you decide that a heart transplant is the best option for a child, and who's involved in that decision?

Dr. Kaitlin Ryan: It's a group effort, a team effort of multiple different physician providers and healthcare associates that determine if a patient is a good candidate for a transplant. And the reason that you may need a heart transplant is variable, but inevitably because your heart is not able to get enough oxygen and nutrients to all of your organs.

Host: Sure. And the need for a heart transplant is obviously huge news to families and their patients. So, how do you prepare families for the idea that their child needs a new heart?

Dr. Kaitlin Ryan: It's an impossible task, and we frequently tell families, I mean, this is something no one should have to go through, but we do the best to be supportive of every step of the grieving process, which is what this is. They're grieving for a life they thought their child would have free of medical problems and surgeries and medicines and all of those things. And so, we just have to work together with our transplant coordinators, our psychologists and the rest of the team to do everything we can for the patient and the family.

Host: Yeah. Are there certain diagnoses that are more likely to need a heart transplant?

Dr. Kaitlin Ryan: Certain types of heart muscle disease, like restrictive cardiomyopathies and certain types of congenital heart disease, single-ventricle type congenital heart disease are much more commonly to end up needing a transplant at some point in their life.

Host: And what requirements does a child have to meet to get a heart transplant?

Dr. Kaitlin Ryan: Each institution has a set of criteria that you have to meet and things that you must not have in order to make you an eligible candidate for a transplant. Most of them are pretty consistent across the country for pediatrics. And most patients are going to meet all of those criteria once their heart function is such that they're not able to do their normal daily activities and they're not able to get their organs good blood supply.

Host: Sure. And how does the heart transplant list work and how long is the wait?

Dr. Kaitlin Ryan: It's priority-based, so the sickest children are at the top of the list. We have statuses starting at 1A, being the sickest patients; 1B are kind of secondary. And then, Status 2 patients are those that are needing a transplant, but they're able to be at their home. And the wait here at Le Bonheur in Memphis is actually shorter than a lot of other places just because of our geography. It can vary between two to four weeks for a bigger or an adult-sized patient. It could be up to as long as six months for a smaller child.

Host: Wow. Okay. And what kind of followup do you have with a patient after a heart transplant? All the way into adulthood?

Dr. Kaitlin Ryan: We do. You know, we're in this with the patients for life. We see them very frequently after they first get a heart transplant and over time, just several times throughout the year. But we continue to follow these patients into adulthood and are starting to transition actually to seeing more patients later on into adulthood and supporting them a little bit longer as well.

Host: Sure. And what's the long-term prognosis for a pediatric heart transplant patient?

Dr. Kaitlin Ryan: It's very good and has increased and improved over time. The current one-year survival rate is greater than 90%. The five-year survival rate is greater than 85% for all children, which is significantly improved from 10 and 20 years ago when transplants were in their infancy.

Host: Sure. Well, thank you so much for that good information, Dr. Ryan. Now, I have some questions for you, Ashley Hilsabeck. What does it mean to be the heart transplant coordinator at Le Bonheur?

Ashley Hilsabeck: We're involved in their care from the time that it's identified that they potentially need a heart transplant. So, there are three of us. We work collaboratively with the medical team to evaluate and help to ensure that all of the criteria are met for evaluation and listing, which includes labs and various imaging, that sort of thing. And then, we spend a lot of time with the families educating. That is a huge piece of what we do. So, the education for heart transplant starts kind of the day we meet them.

Host: Right. Now, you walk with families through one of the hardest, scariest times of their life. What's the experience like?

Ashley Hilsabeck: It's been very humbling. It was very humbling before I had my own children to take care of these kids as an ICU nurse. But then as a transplant coordinator with children of my own, it is very humbling, and I just feel so gracious that the families allow us to step into their lives. We do take up a big role in terms of caring for them and getting to know them. We're constantly in communication with them via phone or various other forms of communication. So, it's always very humbling to me just to watch the journey that the patients take from being incredibly sick, and the parents to process and understand what their child is going through and what their child needs to save their life and prolong their life and what that means for them. They grieve and we really have to help them through that, but also just to watch them on the other side and be that encourager and be able to cheer them on as they overcome mountains that they didn't think that they could.

Host: Sure. Earlier you mentioned education, so how do you educate families on what to expect with a heart transplant and what kind of education is necessary?

Ashley Hilsabeck: It's a little bit catered to each family. Every family has specific needs or things that may cause them challenges. Because we use a multidisciplinary team to perform an evaluation, we're able to identify those challenges or things that may be obstacles that that family may have to overcome.

For education, all the education is focused on where their child is currently, what that looks like pre-transplant, and then moving forward post-transplant. There's certain limitations they have for diet. They can't have certain foods because it interacts with their medications. We also have infection control practices that we really go over with patients and families. And then, really just helping them adjust to kind of the lifestyle afterwards. Medication administration is a huge piece of what we do. And so, we spend a significant amount of time helping the family to understand what medications they're taking, why they're taking it. The timing of medications is very important. So, it's really catered to kind of each family. They don't get exact methods, but the topics that are covered are very succinct. They have certain topics that they have to cover for each class. And then, we are constantly doing reviews. So, every time we talk to them, we're doing a little bit of education. Every time we meet with them in the clinic, we're doing a little bit of education. It's really the center of what we do when we spend time with our patients.

Host: Okay. And how do you prepare families as a whole, not just the child, for transplant?

Ashley Hilsabeck: I like to involve all of the family members that would potentially help to care for this child. When we're talking to families, we talk to them very frequently about how this is something that affects all family members, from siblings to aunts to uncles. We encourage parents and caregivers to identify anyone who may be helping them to care for them. We also require two caregivers to be fully trained. And so, sometimes that's not just mom and dad. Sometimes it's mom and grandma or mom and an aunt. Depending on what their specific situation is, it's variable. So, we really spend a lot of time with not just the parents or the child. It's the caregiver team as well.

Host: Okay. Family is so important. It must be so amazing to see a child flourish after a heart transplant. What's that like for you?

Ashley Hilsabeck: It is absolutely incredible. It's one of the most rewarding parts of this job that it's what's kept me coming back for years and years now. And what I enjoy the most is seeing them thrive and flourish especially knowing like where they were and the emotions that the parents. And even the child, the teenagers, some of them remember what it's like to feel that sick and they really understand what we are getting at and how we are trying to help them with the heart transplant and what it means to take those medications and to regularly maintain their health status and the followup, because it does become sometimes kind of wearing on them. They have to come and see us very, very frequently. And they don't get that "normal childhood." So, it's incredible to watch them through the journey and to see them thrive and flourish. And I constantly am telling parents that the whole goal of this is to get their kids where they are thriving and flourishing. \And that's why we do transplant.

Host: Absolutely. And do you keep up with patients after their transplant?

Ashley Hilsabeck: Yes. We follow them until they're no longer followed in the program. So, we see them in clinic all the time. We are constantly in communication with them. On any given day, I can talk to probably six to ten of them and go over anything that we need. Sometimes it's various things like, "Oh, they need a school note." But then, it's that constant check-in, like, "How's this going? How's that going?" There's a lot of just general maintenance that we do so we get to see them all the way through. We have patients that we've follow for years and years and we get to see them from tiny babies all the way into middle school and high school and beyond.

Host: Great. Well, Ashley, thank you. It's so good to hear that aftercare is so important at Le Bonheur. Now to Dr. Umar Boston. Thanks for your patience, doctor. Dr. Boston, you're the Director of the Pediatric Heart Transplant Program here at Le Bonheur. How do you make sure that a child is as ready as possible for a successful heart transplant?

Dr. Umar Boston: Yeah. That's an excellent question, Deborah. And sometimes it's hard to actually gauge when a patient is ready. These are the sickest patients that we see with heart disease. As Dr. Ryan was pointing out, these are patients with end-stage heart disease. And so when we see them, we obviously medically manage them. And then, there's rehabilitation phase that we like to engage in. Sometimes that requires a special machine called the VAD that helps them along, but we like to rehabilitate them a little bit before engaging in a transplant evaluation. Some of this evaluation, we really want to see that the kidneys and the liver are working well. We know the heart isn't working well, but we need to have some of the other organs working pretty well, and they have to have some kind of reserve to undergo a big open heart operation. So once we've identified those basic factors and, you know, the anatomy is favorable, then we also look at whether or not their immune system is good enough to accept a particular donor heart. And we go ahead, enlist the patient, and wait for a suitable heart to become available.

Host: And can you please walk us through the process of a heart transplant?

Dr. Umar Boston: Well, there's a evaluation phase that a child who comes in is deemed to have end-stage heart disease that may be related to the muscle itself, which we refer to as a cardiomyopathy. There's a number of different cardiomyopathies, but we won't get into that. They may have congenital heart disease for which there are no surgical options for them. And from there, we undergo an evaluation. And in that evaluation, we look at some of these things that I just described, how their other organs are functioning.

And there's actually a lot of other components that go into it. There's a multidisciplinary evaluation from about 15 to 17 different services, such as Nephrology, such as Pulmonology, such as Neurology. Importantly, there's also a psychologist that evaluates the patient as well, because that's a very, very important part of evaluating the family's psychosocial aspects, which is absolutely critical in the postoperative period and for long term.

The operation itself is, I always say, is actually a small portion of this. Because this is an ongoing process in which the patient will still be tied to the medical system and will continue to require being evaluated by our team. And that onus is on the family and they've got to be able to adhere to the medications. They've got to adhere to the visits to the clinics and so forth. That is really, really critical.

Host: Now, I know that a lot of logistics go into obtaining the proper heart for a child. How do you know if the heart is right for the child in need?

Dr. Umar Boston: So, there's a number of different evaluations that we do. Obviously, children come in all different sizes. And so, we have to be able to match up the donor part to the recipient's chest. And so, one of the things that I've actually implemented here at Le Bonheur is to utilize CT scans of the chest, for which we're actually able to calculate the size of the recipient's chest and then make a prediction as to what size of heart would fit into this particular child. Prior to that, it's actually kind of a guess, so to speak, where we utilize a heart that is 80% to two times the size of the recipient. But I think we've got it down to a more scientific way to gauge whether or not the donor's heart can fit into the recipient.

Host: Okay. And in layman's terms, if you could briefly walk us through the process of a heart transplant surgery, that would be wonderful.

Dr. Umar Boston: So, there is a lot of logistics that go into the actual operation. There are two teams involved, actually, because most of the hearts that we get are not from the Memphis area. Actually, most of them are from out of state, 500 miles radius is what we usually use to go out and get a heart. And we're restricted to time. Usually, we need to get the donor heart back into the recipient within about five to six hours. If not, the heart will become non-functional. So, it's a very efficient process. It's a very timely process. As you can imagine, there are two teams involved. There's a team that goes out, which is what we call the procuring team, that they fly out. And during that time, I bring the recipient to our operating room here at Le Bonheur. And it is timed so that I can get the patient or recipient on the heart-lung machine. And then, as I am removing the recipient's heart, the donor's heart is then brought in by the procuring team into the operating room. And then, the implantation of the heart then takes place.

Host: And then, what's the recovery process like for these patients? How often do you see them after their surgery?

Dr. Umar Boston: Well, the recovery time varies. And it varies based on diagnoses, and it varies based on how well rehabilitated these patients are as they go into the operation. So if you have a patient who's got what we refer to as a dilated cardiomyopathy, those patients have very, very quick turnaround. It's remarkable how quickly some of patients can recover versus some of the other children who may link into their surgery, or their transplant, and it may take them a little longer. There is some variation on the recovery. But usually, between, you know, I would say four to six weeks, most of these patients are out of the hospital and running around and wouldn't even notice that they've had this big, big operation or, you know, their heart function wasn't working well and they couldn't walk a block.

Host: So, what's the most rewarding part of performing heart transplant surgeries for you?

Dr. Umar Boston: This is a remarkable opportunity that I get to do about 12 to 15 times a year. You know, you're taking the sickest of the sick patients, children to the operating room. Some of them can barely eat. Some of them can barely walk. And you're really impacting their life. You're putting in a new heart that's functioning well. And you can see that you've really changed not only their child's life, but their family as well. I mean, this truly is a gift. It's remarkably impactful for the children, for the families, and even for the physicians and nurses and so forth that are taking care of them. I mean, got so many stories that we can share with you regarding kids who have come in required machines to keep them alive, and remarkably, they get out of the hospital after a heart transplant. To me, that's very, very rewarding.

Host: I can only imagine. What does the future look like for pediatric heart transplant? Anything new on the horizon?

Dr. Umar Boston: Yeah. This field is always evolving. Pediatric Cardiac Surgery, Cardiology is an evolving field. It's a very innovative field. I think areas that we need to focus in on are some of the limitations of heart transplantation, which include after we implant these hearts, children continue to require immunosuppression because the body has an immune system that has evolved over hundreds of thousands of years that, as soon as it sees a foreign organ within it, it will try to reject it. And so, we're constantly trying to quell the immune system of the recipient so it doesn't attack the organ. And it's a fine balance, because you can give too much immunosuppression and that leads to infection and too little immunosuppression can lead to rejection.

But the Achilles heel of heart transplantation is that you're always going to end up with the blood vessels that supply the donor heart narrows down over time, and that is kind of an immune problem. And so, there's a lot of innovative studies and research going on now, looking to see whether or not you can modulate the recipient's immune system to some degree to allow for better adjustment, so to speak, so that the recipient's immune system doesn't attack the donor heart.

Host: Well, let's hope that day comes soon. Well, to this wonderful panel, Dr. Ryan, Dr. Boston, and Ashley, thank you so much for talking to us today about how to keep hearts beating strong in our children. It's been wonderful to have you with us.

Dr. Umar Boston: Our pleasure.

Dr. Kaitlin Ryan: Thank you, Deborah.

Ashley Hilsabeck: Thank you.

Dr. Umar Boston: Thank you so much.

Host: Please visit lebonheur.org/heart to learn more about the heart transplant program at Le Bonheur Children's. This is the Peds Pod by Le Bonheur Children's Hospital. Please visit lebonheur.org for all your pediatric needs. I'm Deborah Howell. Thanks for listening and have yourself a great day.