Milestone in Pediatric Liver Transplant at Lurie Children's with Dr. Juan Carlos Caicedo

The Pediatric Liver Transplantation Program at Ann & Robert H. Lurie Children’s Hospital of Chicago recently completed its 500th liver transplant. This milestone comes 28 years after performing its first one in 1997. As one of the largest and most experienced programs of its kind in the country, the pediatric liver transplantation team consistently has high volumes of patients with successful outcomes. In this episode of Precision, Dr. Juan Carlos Caicedo, Division Head of Transplant & Advanced Hepatobiliary Surgery and Surgical Director of the Siragusa Transplantation Center at Lurie Children's talks about what this milestone means for patients, families, and the future of transplant care.

Show Notes

• Lurie Children’s performed its first liver transplant in 1997 and since that time has grown into one of the most experienced pediatric liver transplant centers in the nation. With more than 500 surgeries completed, the program has set a standard of excellence that only a handful of children’s hospitals have reached. This history underscores the program’s commitment to advancing surgical techniques, building a highly skilled team, and providing world-class care to patients and their families.
• The liver transplant team offers whole liver, partial liver, split liver, and living-donor liver transplants. These advanced surgical options increase access for children who might otherwise face long waits or limited options.
• For many children who come into the program, a liver transplant is often the only path to survival. Dr. Caicedo says many of the children who are weak, malnourished, and unable to thrive before surgery often go on to regain their health and  grow into adulthood with full lives. Many of the patient families also experience profound transformation—moving from fear and uncertainty to hope and gratitude as they watch their children recover and flourish.
• The program treats a wide range of liver diseases, including biliary atresia—the most common cause of pediatric liver failure—alongside genetic, metabolic, and acute conditions. Lurie Children’s ensures that each patient receives personalized treatment from diagnosis through long-term follow-up.
• A unique partnership with Northwestern Memorial Hospital, Lurie Children’s can pursue living-donor transplants and complex surgical collaborations. Adult donors are cared for at Northwestern Memorial, while pediatric recipients are treated at Lurie Children’s, with both hospitals connected by skybridges for seamless care. This close integration ensures that families never feel divided between institutions and that both donors and children benefit from the expertise of specialized transplant teams. 
• Disparities still exist in transplant access. Dr. Caicedo founded the Hispanic Transplant Program to reduce cultural and language barriers that often prevent families from seeking or receiving care. This program has led to improving access to transplants for Hispanic children at Lurie Children’s by more than 60%. This model has since inspired similar programs across the country, helping ensure equitable access to lifesaving surgery. 
• The liver transplant team has no plans to slow down and continues to lead through research, innovation, and training the next generation of specialists. With referrals coming from across the United States and around the world—including Latin America, Canada, and the Middle East—families are choosing Lurie Children’s for its expertise and reputation.

Transcript 

[00:00:00] Erin Spain, MS: This is Precision Perspectives on Children's Surgery from Ann & 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 are transforming pediatric medicine. Today we are celebrating a major achievement at Lurie Children's. The Pediatric Liver Transplantation Program recently completed its 500th liver transplant. This comes 28 years after performing its first one in 1997. As one of the largest and most experienced programs of its kind in the country, the pediatric liver transplantation team consistently has high volumes of patients with successful outcomes. Joining me today with details on this milestone is Dr. Juan Carlos Caicedo, the Division Head of Transplant and Advanced Hepatobiliary Surgery, and surgical director of the Siragusa Transplantation Center at Lurie Children's. Welcome to the show. 

[00:01:08] Dr. Juan Carlos Caicedo: Thank you very much, Erin. It is a pleasure to be with you, thank you for having me. 

[00:01:13] Erin Spain, MS: Well, this is a very exciting story we're gonna be telling today, this big milestone, 500 liver transplants. This is something only a handful of pediatric hospitals around the country have achieved. What does this milestone say about Lurie Children's and the program that was established here in 1997? 
[00:01:30] Dr. Juan Carlos Caicedo: Yeah. This is something amazing. Because, uh, transplantation is a team sport. This is not only one person trying to do it, it's a whole team. Caring for a child in this case and their families to be able to do 500 transplants is amazing. As, as you said, Erin, very few centers in the nation have achieved this milestone. 

[00:01:55] Erin Spain, MS: Thinking about 1997, things were different back then. We know so much more now. Can you just talk about those early days, 1997 and how it's changed over the years? 

[00:02:06] Dr. Juan Carlos Caicedo: There's a lot of changes in. Early, early field. By then, the outcomes are not as good as now and there's a lot of improvement in surgical tech techniques. We are offering access to care to these patients because, for example, here in Lurie Children's, we provide all types of liver transplants. It's not only a whole liver transplant, we do partial liver transplants. We take a single organ and divide it in two and transplant two people, or we, we reduce the size of a liver to allow it to fit the child. We're a fancy tailor. We reduce the size of the liver and that is what we give to the patients. Or we take a piece of liver from somebody alive, and in that way we're improving access to transplant care for these patients and they are getting transplanted and the outcomes are much better. And then even the medical management is better, the immunosuppression is better. Now we're working in minimizing immunosuppression, minimizing the complications associated with that. There's a lot of them. And innovation that has helped us to improve outcomes in this community. 

[00:03:12] Erin Spain, MS: And here at Lurie Children's, there are some eyewitnesses to this progression. In 1997, there are three people that were at that first surgery who are still here today. Tell me about that consistency over the years. 

[00:03:24] Dr. Juan Carlos Caicedo: Yeah, no, this is amazing. Then we have to recognize these people. First, let's start with Dr. Riccardo Superina. He's truly a pioneer there in the field of pediatric transplantation, pediatric surgery, portal hypertension, surgery. He's world renowned. Pioneer in these fields and he has started the program. But also we have to recognize also our hepatologist, Dr. Estella Alonso, she has started with him as well, with Peter Whittington that now she, he is retired. They started this program together. And now we have, uh, achieved this huge milestone and also , surgical tech Pamela Gresser. She has been with us and still is today. We did surgery with her yesterday. 

[00:04:13] Erin Spain, MS: So we're thinking through all these 500 patients the team has served over the years, how life-changing is this operation for these patients? You know better than anybody how this can change lives. Can you just tell me about the impact that this surgery has on people? Yeah. 

[00:04:27] Dr. Juan Carlos Caicedo: Yeah. The impact is huge. We can analyze different aspects. One is about the kid for the patient itself. For them, they were very sick. Usually before the transplant and without transplant, most likely they'll die. They are critically ill, they are not growing. They are malnourished. They are very weak and frail and they are not enjoying life. And if that's happened to the kid or the baby, the family is suffering too. But we delivered a transplant. They have this new option of life and then. With the transplant, now they can start, you know, the color change. Now there is no itching all over. They start eating again. They are able to grow and they are able to even walk. Some days they were not able to walk and now they can walk, they can go to school. And now with 30 years, we have patients that have gone to college, and they have got married. They are now having a normal life after transplantation, then their liver transplant transformed not only the kid, but also transformed their families. They were suffering. They didn't even have hope. For the future. But now with the transplant, they're enjoying that present and their future. 

[00:05:45] Erin Spain, MS: You talk about just how sick some of these children are and that they need a liver transplant to survive. Can you explain some of the conditions that lead to liver failure and the need for liver transplant? 

[00:05:56] Dr. Juan Carlos Caicedo: There is a spectrum of diseases. The most common cause is when there's biliary attrition. What that means, the biliary system is not developed, the bile cannot drain and that damage the liver over time. And this kid became very sick. That is the most common cause. But there's also other types of causes, like metabolic diseases that can affect the liver too, right? There are genetic causes that also end up as liver failure. And sometimes there's acute diseases, you know, sometimes there's infections or sometimes there're failures in bigger kids. If they're taking Tylenol by accident or something, they can develop acute liver failure. And many of them, if they don't improve spontaneously or make a treatment, the only option for them is transplantation. 

[00:06:51] Erin Spain, MS: The great news is today, liver transplantation in children is a highly successful therapy. Tell me about the outcomes of your patients. 

[00:06:59] Dr. Juan Carlos Caicedo: Yeah, absolutely. The outcome has improved dramatically over the years, and here at Lurie Children's, as we have a very comprehensive team, very experienced team, then we have been able to improve the outcome dramatically. We're in the top tier of outcomes, one year, uh, three years, and we are seeing, uh, survivors over 95% of one year when without transplant, death was very certain, right? Then we're talking that most of the patients may die without liver transplant. We're transplanting, we're getting survivors about 90, 95 is fantastic. 

[00:07:38] Erin Spain, MS: You know, one of the reasons this program has been so successful is because it's one of the only pediatric programs in the country that can perform split liver and partial liver transplantation. Now, you mentioned this already, it's really an incredible procedure and has benefited your patients and adult patients at the same time. Can you explain this in more detail to me? 

[00:08:00] Dr. Juan Carlos Caicedo: Yeah, absolutely. Then first of all, you know, human beings, we have only one liver, but the liver is the only organ. That can regenerate. We can remove up to 70% of our liver. If we're alive and if the liver's healthy, we can remove 70% of the liver without problem and we can use that to transplant somebody else. Usually it's an adult recipient, but just to say the liver regenerates for a small baby, sometimes we just need 25% of the liver. Or if it's a bigger kid, maybe the left is 40% of the liver. Then that's why, for example, we can. Take a single organ from a deceased donor, we can divide it into and transplant two people. Most of the time we're transplanting a child as when an adult, but he and Lurie Children's because of our team, because of our experience, we're one of the few in the nation and in the world that can do an interinstitutional split liver transplant. That means that we transplant a small baby and a bigger kid. In the same institution, we have done that multiple times. That is remarkable. Then we're saving two patients with a single. The option is if the liver's too big for that recipient but it's too small to transplant two patients. Then what we can do, like a fancy tailor, if the liver is too big and the recipient is smaller, we can just cut. Reduce the size of that liver to make it smaller. And in that way we can transplant that kid. That is called reduced liver transplant. And the other option is taking a partial graph from somebody alive, a family member, the parents, the brothers, uncles, or somebody from the church or somebody that doesn't know the kid that heard about the kid needs and they offer to donate. The liver is a non-direct donor and they can help save the life of the kid with this donation. That is something that we do here at Lurie Children's. The living donation, we partner with Northwestern Memorial Hospital. Our surgeons work there as well here at Lurie Children's, and we are able to do that. The adult donor happened in Northwestern Memorial Hospital. The the transplant for the kid happen here Lurie Children's 

[00:10:17] Erin Spain, MS: For people who don't know, talk about that proximity with Northwestern Medicine and Lurie Children's and how that benefits both institutions and patients, adult and pediatric patients. 

[00:10:27] Dr. Juan Carlos Caicedo: As I said before, transplantation is a team sport. It's not only one person doing it, and then that is a limitation in other centers in the country and in the world, the problems that they're isolated from. To do these complex procedures, you need to have a lot of experience and a big team and you have to combine. For example, if it's a living donor, they're adults and the transplant or the donation won't happen in the pediatric hospital, but will happen in the adult hospital. But because we are integrating the transplant programs, then we work together and then we'll donate. The parents or the family member or somebody that just moves forward non-direct donor or altruistic donors. The surgery, the evaluation. The donor evaluation as well. The surgery happened in Northwestern Memorial Hospital. There is just basically a building connected to Lurie Children's is another building for people that don't know downtown Chicago, but basically they are connected. It's one block away, but they are connected through bridges. Then people don't need to go out of the hospital, if they want to go from Lurie Children's to Northwestern Memorial Hospital, they just walk through bridges. And it's just less than a block. And then this, the donor operation happened there, and then we transported the graft to Lurie Children's where the transplant happens. 

[00:11:50] Erin Spain, MS: Another exciting aspect of the program is that Lurie Children's is able to serve a lot of different people. From all different walks of life. You mentioned different countries from people around the world. You're the director of the Hispanic Transplant Program, which you also founded. Tell me about this program and how it helps Lurie Children's reach more patients in need of transplant. 

[00:12:14] Dr. Juan Carlos Caicedo: After I complete my fellowship. Here at Northwestern. I started as a faculty and then I thought that I should serve our population. and there was a big need here in Chicago. One third of our population are Hispanic. One third is African American, one third is uh, white. and there were no specific programs in the nation to help them. There were a lot of barriers for them. You know, one big barrier is just. the language. I remember one of our patients told us before we started the program that he called nine transplant programs. And as they answered in English, even though he has a private insurance, he hung up. There's a lot of people think that the problem is the insurance, sometimes the insurance is not the issue. The the problem is even the language. And then just having a program that is bilingual. Meaning that not only we speak the English, but also we can speak the Spanish as well. Uh, we are culturally competent, meaning that we understand patient's culture that is essential to help to change their perception, the misconception that they may have of our organ donation about organ transplantation. We have started a program, I start by myself now. We have more than 60 people that are bilingual, bicultural and Northwestern Memorial Hospital. and then we have transplanted more than 1500 patients. And we improve access to transplant care to this community, the Hispanic community by 91% without affecting the access to any other group. We didn't affect the access to whites or African Americans or the other, we just improved the access of these underserved community and we were able to increase, for example, the number of kidney transplant. This community by 74%, we decrease the disparity between Hispanics and whites, and it is very well known. There's a huge disparities in these underserved communities, but we're able to reduce the, disparity by 70%. That was for kidney. For liver transplantation. Also, we improve access to transplant care for the Hispanic community by 68%, we increase the number of living donor liver transplants by 80%. That is kind of amazing. Of course, this is a small number, but again. Is the trend. And now we have held a lot of centers across the country to develop these types of programs. Now, here at Lurie Children's, we're fortunate to have multiple members of our team, for example, the kidney program that is bilingual and bicultural, that were, offering this type of service for our Hispanic community. And again, removing culture. uh, Language barriers help a lot. And sometimes that is the issue. The surgery, the immunosuppression and everything else is kind of similar, right? You, we customize, but actually the, sometimes the problem is just the communication and we remove the barrier. That is very helpful. And we have created other programs also to help other, uh, underserved communities. And we were the first in the nation developing these programs. 

[00:15:18] Erin Spain, MS: You mentioned that transplantation is a team sport and the families as well as the patients, they're part of that team too. Can you talk a little bit about that relationship that you have with the families and patients and how by offering more access, how that can help the program be so successful? 

[00:15:33] Dr. Juan Carlos Caicedo: It's essential. I mean, this is not about the patient. It is about the whole family, and especially when the patients are so sick, the whole family is suffering. It's affecting them at so many levels. It's affecting how they can work. They can perform their regular life. Everything shuts down when the kid is sick. then, but working with them. It is essential because also that will help the kid later on, right? If they're well informed, they will help the kid when they become teenagers to make sure that they don't stop taking the medication, that they have rejection, they can lose the graft. That is a very common cause of losing the graft over time. But again, develop the relationship with them, the follow ups, and doing the transition of care. And actually, you were asking before. What is the advantage to having the relationship, for example, with Northwestern, now we have to, we are transitioning these patients that were transplanted as a baby. We're transitioning the care to the adult program because we are integrated. We collaborate, then we can do that transition easier. That many programs in the country, they don't have that relation with the adult program. And it's because we are part of that program also, we can help the transition of this patient then that can give peace of mind to our patient. This is not only dealing with the problem when they were babies, but then whenever they grew up. They have to do the transition as adults. They know that there's some support and we can provide that. The support, we guide them. The whole life, basically, you know, patients when they get the transplant, they can return to the primary doctors or the pediatrician, but for the transplant care usually is done here at Lurie Children's and eventually when the transition is done because they are teenagers or adults, now they go to the adult hospital. That is also very important, that helps with the outcomes over time. 

[00:17:27] Erin Spain, MS: And you've described how this program has really grown and blossomed since 1997, and the outcomes are so great now. But what do you think about the future of pediatric liver transplantation? 

[00:17:38] Dr. Juan Carlos Caicedo: Well, I'm an optimistic guy, and, and we see it. The future is bright because we are working not only doing the transplant, we're doing research, we're doing innovation. We're educating the new generation of transplant providers, the surgeons, the hepatologists, the nephrologists. We're focusing on improved access to care for patients or group communities that are underserved, but also some patients are coming from around the world. We're talking about from the Middle East, we're talking about from Latin America. We're getting patients from Israel and Canada too, and Mexico. And. What a better place than Lurie Children's here in Chicago. A great city with a beautiful hospital downtown Chicago with a great airport then it's easy to fly to Chicago to receive the best treatment possible, and most importantly, to receive hope when hope is lost. 

[00:18:40] Erin Spain, MS: For those families who are coming to Lurie Children's or considering coming to Lurie Children's for a transplant, what message would you like to leave them with today? 

[00:18:49] Dr. Juan Carlos Caicedo: They should know that here at Lurie Children's, we have a multidisciplinary team that will take care of them when they are in that situation, when there's no hope for this multidisciplinary team to help them. To regain hope. and they'll figure out ways to do it. I mean, now we have a combined heart and liver transplant program. We are doing an intestinal transplant, a multiverse transplant. We're combining liver and intestinal transplant. When there are big tumors that other institutions consider, they cannot be resected. We have different ways to figure out how we can make resectable. Patients that were not resectable, and a lot of patients that were not transplantable, we make them transplantable. It is well known that the outcomes improve when there's more experience, when there is higher volume. Last year at Lurie Children's, we're number one in the nation doing kidney transplants. We're number three in the nation doing abdominal transplant overall. Then we're talking about a kidney transplant, liver transplant, intestinal transplant. We combine, we're number three in the nation. But this institution, the experience goes beyond even, uh, pediatrics in, uh, adults. We are doing 400 kidney transplants. We're doing 150 liver transplants per year. Per year. And we have done close to 7,000 kidney transplants in adults. And, and livers close to 3000. Then there's a team that has a lot of experience overall. Right, and specifically in, in pediatric transplantation is one of the teams with the largest experience in us.

[00:20:26] Erin Spain, MS: Congratulations again on this incredible milestone, the Pediatric Liver Transplantation Program here at Lurie Children's, completing its 500th liver transplant.

[00:20:35] Dr. Juan Carlos Caicedo: Thank you so much.

[00:20:36] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit luriechildrens.org.

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