A Pioneering Pediatric Living Organ Transplant Team

For children needing a new liver or kidney, the greatest hurdle is often finding a healthy organ. While the organs of deceased donors are extremely limited, living donors can offer pediatric patients a chance at life. Lurie Children’s Living Donor Transplant Program is the largest in the region thanks to a partnership with Northwestern Medicine. In this episode, Dr. Juan Caicedo and Dr. Satish Nadig, who lead the program, offer insight into this decades-long collaboration that has resulted in more than 1,700 solid organ transplants since its inception and offers organ donors and recipients the best and most comprehensive care possible.

“We have to see the patient as a human being, and the family is the same. It's beyond the organ. We have to consider their mind, their soul, their spirit. That's why our team includes psychologists, social workers, psychiatrists… kidney doctors, liver doctors, gastroenterologists, and hepatologists. We all assess the patients.” 

Dr. Juan Caicedo
Attending Physician, Transplant Surgery, Lurie Children’s
Professor of Surgery in the Division of Organ Transplantation, Northwestern University Feinberg School of Medicine

 

“The future is now. We are in the most exciting time of transplantation that I can imagine or remember… transplantation is not an experiment anymore. Making it better is what we are dedicated to doing. We're really in that paradigm-shifting renaissance of transplantation right now.”

Dr. Satish Nadig
Attending Physician, Transplant Surgery & Advanced Hepatology
Edward G. Elcock Professor of Surgery  in the Division of Organ Transplantation, professor of  Microbiology-Immunology and Pediatrics, Northwestern University Feinberg School of Medicine
Director, Comprehensive Transplant Center, Northwestern University
Chief of Organ Transplantation in the Department of Surgery, Northwestern University 

Show Notes 

  • The living donor program at Lurie Children’s is the largest in the Chicago region and has completed more than 1,700 solid organ transplants since its inception. This program was developed to address several challenges young transplant patients face if they were to wait for organs from a deceased donor pool.
  • Family members frequently become living donors for young patients in need of a transplant. Donors are typically adults who are free of medical comorbidities, such as cancer, cardiovascular diseases, cardiac issues, metabolic diseases, or obesity. That the donation is purely voluntary is essential.
  • Northwestern Medicine and Lurie Children's Hospital collaborate closely on their patients’ care. Their proximity (across the street from one another) provides a seamless process for transporting organs, which reduces ischemic time and improves patient outcomes.
  • Kidney transplants are the most common living donor transplant, because kidney donors can live healthy lives with one remaining kidney. For liver transplants, up to 70 percent of a liver can be donated, and within 3 months, the donor organ will grow back to its normal size. Split liver transplants are an incredible and massive procedure in which a single liver donation can be split between two recipients.
  • Compatibility factors for donors include blood type and immunologic compatibility. However, medical advances can override incompatibility issues in some cases. 
  • The collaboration between Lurie Children’s and Northwestern Medicine allows for post-operative care into adulthood, as a patient transitions from child to adult. In fact, the teenage years present the highest risk of losing a transplanted organ due to negligence in care.
  • Northwestern Medicine was the first in the U.S. to develop a Hispanic transplant program. This increased transplant care for Hispanics by 91%. It was the first to develop a transplant center for African Americans as well. This attention to culturally sensitive care helps the team meet the needs of diverse communities.
  • Advances in transplantation, such as robotic surgeries and the use of nanoparticles for drug delivery, are highlighted as future directions that could further improve outcomes.
  • Pediatric transplant patients and their families are on an emotional rollercoaster as they navigate their care. They require intensive support and dedication, which the staff at Lurie Children’s and Northwestern Medicine are committed to providing.
  • Trials and research by Northwestern Medicine and Lurie Children’s are leading to new best practices in immune tolerance with fewer patients requiring anti-rejection medication than anywhere else in the world.

Transcript 

[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. For children needing a new liver or kidney, the greatest hurdle can simply be finding a healthy organ that's available for transplant. But while organs of deceased donors are extremely limited, living donors can offer pediatric patients a chance at life. Lurie children's living donor program is the largest in the region thanks to a partnership with Northwestern Medicine. The decades-long collaboration means both adult, organ, donors and pediatric organ recipients receive the best and most comprehensive care possible. Doctors Juan Carlos Caicedo and Satish Nadig, adult Satish and pediatric transplant surgeons at Lurie Children's and Northwestern Medicine lead this joint effort. They join me to discuss this uniquely robust program, which has completed more than 1700 solid organ transplants since its inception and ranks among the highest numbers of pediatric organ transplants in the country. Welcome to the show.

[00:01:26] Satish Nadig, MD, PhD: Thanks, Erin. Excited to be here.

[00:01:28] Juan Caicedo, MD: My pleasure, Erin.

[00:01:29] Erin Spain, MS: Before we talk about the success of this unique collaboration between Lurie Children's and Northwestern Medicine, let's first talk about living donor organ transplantation and pediatrics. Why might pediatric patients be in need of organ transplantation and why are living donors so crucial when it comes to pediatric care?

[00:01:48] Juan Caicedo, MD: It depends on what is the organ is needed, the causes are different, right? And also depends on the age of the kid. If we talk about kidney transplant, maybe the reason is a genetic issue, a metabolic issue, or there's a glomerular disease when they are older that can cause the problem, or there are some systemic diseases that can cause problems on them. If it's a patient that requires liver transplant depends on the age too. The most common cause of biliary attrition is when the biliary system doesn't develop, but also there's metabolic diseases, there's tumors. And some patients need a small bowel transplant or multi visual transplants, and because the bowels are not working, they are damaged because congenital, diseases, or because they have lost a bowel due to development diseases, or there's a functional problem in the bowels, then they eventually will need a transplant.

[00:02:49] Satish Nadig, MD, PhD: Thankfully, there are not as many children that need life saving organs as there are adults in the population. But when they need them, they need them. And we often are up against constraints of size that we aren't necessarily up against those constraints in the adult population. Oftentimes also, when children need them, they have progressively worsening disease processes, especially when they have liver failure. And we don't often have time to wait for organs that could become available through the deceased donor pool, which is the most common way that we do transplant people. So we look to living donations. 

[00:03:25] Erin Spain, MS: The living donors are often adults, they're family members, sometimes mom and dad or relatives, and this makes this partnership between Northwestern Medicine and Lurie Children's so important. Tell me about the comprehensive care that you're able to offer both the living donor and the child receiving the transplant.

[00:03:44] Juan Caicedo, MD: We are working together. It's not only about the child, but it's also about the family and all the social support networks that they have. And then we have to help all of them. This is a very important partnership because the transplant in the kid will happen in Lurie Children's Hospital, but the donor operation and all the pre-donation evaluation, the surgery and the follow up of the donors, is going to happen in the adult hospital. Then this is essential to have our coordinated efforts between both the pediatric hospital, as well as the adult hospital. Then basically we have a big team in both programs in the Lurie Children's Hospital as well as Northwest Memorial Hospital, where we work together to evaluate. Then when we evaluate donor and recipient, it's kind of similar in a way because we want to make sure, first of all, that there is no medical, surgical, or psychosocial contraindication for the recipient to underwent the transplant as well as the donor. And specifically about donors, we want to make sure that even though everything in life is a risk and donating it as a risk, if we have a thorough evaluation, we minimize the risk as much as possible to be able to have the best outcome, not only for the recipient, but also for the donor. The safety of the donor is essential. and we want to make sure that all donors will recover well after donation and they can have a normal life. They can work, they can exercise, they can eat whatever they want. They can return to the daily activities and all normal life that they have prior to donation. That is at least the goal.

[00:05:16] Erin Spain, MS: For people who don't know, these two hospitals are literally across the street from each other. Explain that proximity and what an important aspect that is in all of this.

[00:05:26] Satish Nadig, MD, PhD: Well, we're connected through bridges, and all indoors, and our operating room's on the Northwestern side. We work closely with our organ procurement specialists. We remove the organs and literally walk them over to the operating room on the Lurie Children's side. What that does is decrease the time that's out of the body. And so that's called ischemic time, and it just improves our quality and improves our outcomes.

[00:05:49] Erin Spain, MS: What makes someone a good living donor and what might exclude someone? You mentioned a few things there about the general health of the patient, but explain that to me.

[00:05:59] Juan Caicedo, MD: Usually adult people. They're older than 18, don't have any medical comorbidity and more important, actually, we want to make sure that is a voluntary decision. Without coercion. Then now we start evaluating if there's any medical, surgical, psychosocial contraindications. Then in the medical standpoint, we want to make sure that there is no infections or cancers or cardiovascular diseases or metabolic diseases that could be a contraindication. In the U. S., as most of the population is obese or overweight, 60-75 percent of the population, there is a risk factor for potential diseases in the future. Specifically for liver donation, if people are obese, there's a high chance that they will have fatty liver disease, and then maybe they can't donate. Although I have to say, obesity is a relative contraindication, because if people lose weight, they can improve their health, and then eventually can donate an organ. I can mention one of our donors lost 120 pounds before she was able to donate her liver. Then, obviously, this is a relative contraindication, but of course, that doesn't happen overnight. Then we want to make sure there's no cardiac problems. and psychosocially make sure that they are sound, that there is no psychiatric diseases that can affect the recovery of these people. They are always wonderful people. And we want to guarantee or be sure as much as possible that they are going to be okay after donation.

[00:07:34] Erin Spain, MS: There's also that compatibility issue. Can you talk about that?

[00:07:38] Juan Caicedo, MD: One compatibility could be the blood type, for example, for kidney transplantation, but there's the immunologic compatibility, HLA, the how much the donor recipient share. Sometimes the donor can have antibodies against the recipient's cells and can attack and can generate rejection. But if they are very compatible, for example, if a family member or a sibling, maybe an identical twin, that means that immunologically speaking, they are the same. Even though they're a different person, immunologically speaking, they can be HLA identical. That means the immune system in the recipient is not going to recognize as a different the organ that is receiving and there is less chance to reject the organ and less immunosuppression will be required over time. Here at Northwestern, we have done a lot of transplants. As a team, in both hospitals, we have done more than 7, 000 kidneys. For the liver transplant, we have done now, 3,000 liver transplants as a team, more than 2, 500 adults and close to 500 kids. Even though we always say in transplantation, you know, compatibility is important, and it is, but sometimes we can go even against compatibility and make it work. Then for kidney transplantation, we can do ABO incompatible and highly sensitized patients, or we can do swabs, kidney perdonations. For livers specifically, for example, in kids, small kids below two years, we can do ABO incompatibility very successfully. Then, depends of the organ and depends the age of the patients, we can go even against a blood type and do an incompatible transplant. But again, most of the time, if it's possible, we want to have compatible organs. Make it easier and minimize the risk in the recipients.

[00:09:30] Erin Spain, MS: Which organs are living donors donating most often? Is it a part of their liver, kidney?

[00:09:36] Juan Caicedo, MD: Then the most common organ is the kidney followed by the liver. Then basically we usually have two kidneys and we can have a normal life with one, only one kidney, as long as we don't have any other comorbidities We have only one liver, but the liver is a wonderful organ that even we can remove up to 70 percent of the liver in a healthy donor, and in three months, their liver will grow back to almost normal size. 

[00:10:03] Erin Spain, MS: You walked through a little bit some of the screening and evaluations that you do on living donors, but now, this procedure, while it is so incredible and life changing, it is still very difficult for the families and the children who are undergoing this. So, tell me about this approach to care that you take when it comes to pediatric transplantation.

[00:10:22] Satish Nadig, MD, PhD: This is an emotional rollercoaster, no question. From the moment that these patients and people get diagnosed with organ failure, it's an emotional rollercoaster. And we can't get you off that roller coaster, and that's the first time often that they've been on that roller coaster. The good news is we've been on that roller coaster before, so we sit right next to them and tell them where the twists and turns are going to be, and that's the only thing that really can decrease your anxiety. So I tell people we can't guarantee 100 percent of anything in medicine, you just can't do that, but what we can guarantee you is that we'll be 100 percent honest with you, we'll take 100 percent good care of you. By telling you where these twists and turns are going to be, because we have such a robust program, we have seen almost everything, and I never say everything because you never know. But we've seen almost everything with the experience that we have, that we can often predict the parts of the process that could go well, and they could face, and studies that we would do, and the plans that we have that go all the way from A to Z.

[00:11:16] Juan Caicedo, MD: We have to see the patient as a human being, and the family is the same. it's beyond the organ. We have to consider their mind, their soul, their spirit. That's why part of the team is our psychologists, social workers, that's our psychiatrists, is not only surgeons, but is also the nephrologist or the kidney doctors, the liver doctors, the gastroenterologist, hepatologists, and then all of us assess the patient as well, talk to the families, we educate them. There's a lot of education in our process. For example, before donation, before we evaluate them medically, we provide talks to them to set up expectations, to answer the questions. We have a lot of this information on the website. And this is no one time event. It's a journey. Everyone in the team provides a lot of information, education, answering questions throughout the process.

[00:12:12] Erin Spain, MS: And this continues really into adulthood for a lot of these children. You're able to transition them from being Lurie Children's patients to when they reach the teenage and adult years, Northwestern Medicine patients. Tell me about that transition.

[00:12:25] Satish Nadig, MD, PhD: The number one reason that adolescents lose their organs is because of non compliance of their medications. And that is extremely important for us because it's preventative. Those are unforced errors. And why does that happen? Well, they're not in the childhood or the baby stage where people are administering their medications to them, nor are they in the adult stage where they understand the ramifications of their consequences and ramifications of their actions, nor the full gravity of what actions can do. So they truly need much more intensive, one on one, patient centric approaches to their needs in that transition time. We recognize that, we realize that, and we have dedicated physicians that communicate with their physicians at Lurie's to have this young adult transition and care program so that we can make sure that the quality of their outcomes is maintained when they come to the adult side. Because at the adult side, we do a lot more organs for sure, I mean, there's more adults that need transplants. For example, the United Network of Organ Sharing comes out with volume rankings and Northwestern's the eighth largest transplant program in the country. We do close to 400 kidney transplants a year and close to 150 liver transplants a year last year. And we're the second highest pancreas transplant program in the country at Northwestern. When they come here, they're in a huge pool of people that all need specific care but they need a little extra attention and we realize that and we put that infrastructure in place.

[00:13:54] Erin Spain, MS: Another big differentiator of this program is that it's very culturally sensitive. Dr. Caicedo, can you tell me a little bit more about that?

[00:14:03] Juan Caicedo, MD: For example, we have a dedicated program for Hispanics. We were the first center in the U. S. who developed a Hispanic transplant program. Now, we have been able to transplant here at Northwest Memorial Hospital more than 1, 500 Hispanics. We're able to improve access to transplant care of Hispanics by 91%. And we're able to increase the number of living donor kidney transplants in Hispanics by 74%. And we decreased the disparity between Hispanics and non Hispanics white living donor kidney transplants by 70%. We were the only one in the country with these types of results, helping this community. Then this is a culturally sensitive approach. And as the Hispanic community is very family oriented, we want to bring the whole family. We want to educate the whole family. When we resolve the questions they're more willing to support the patient. They're more willing to help them. The outcomes are better. And many times they decide to become donors. And that's why we have a Hispanic community here in our hospital, for example, has had one of the highest living donation rates compared with any other ethnic group. And this is the opposite to what we see in the United States. This cultural sensitivity approach is really, really important. We also, at Northwestern Memorial Hospital, we developed the first African American Access Transplant Program. Then we're helping to remove all these mistrust, misconception to improve the care of this community. We really need to personalize the care of our patients and that is what we do and that makes the difference.

[00:15:44] Erin Spain, MS: Dr. Nadig, tell me about your role at the comprehensive transplant center at Northwestern University Feinberg School of Medicine, and this approach that you have, there called the matrix research approach to aid in transplantation. What is that? And how does it benefit potential donors and recipients?

[00:16:01] Satish Nadig, MD, PhD: I'm the director of the Comprehensive Transplant Center. And I serve as the chief of the division of transplant surgery which means I oversee the entire transplant program here. But my job is super easy. Honestly, I'm surrounded by really good people. I set my vision and I get out of their way. That's my method of leadership here at Northwestern. And one of the ways we do that is we integrate all of our experiences and experts into this entity that we call the modular approach to transplant research by interdisciplinary experts or the matrix approach. And Northwestern University and Lurie Children's are experts in something called immune tolerance. We have more patients off of anti rejection medication than anywhere else in the world. Now, these anti rejection medications are what people are suffering from and often people die from after transplant because their organs are doing well actually, but those anti rejection medications have so many side effects. So we use various approaches, often cellular approaches to trick the immune system with your own cells and sometimes your donor cells in a living donor situation to not require those anti rejection medications that go through your whole body, and that's called immune tolerance. We're still in trials for that, but we have more people off anti rejection medication than anywhere else in the world. We're in the process of starting to do targeted drug delivery trials, where we design trials around some of the research that I've spearheaded, where we package these anti rejection medications and nanoparticles, and we target it to the organ, not the patient. These pillars of immune tolerance and engineering tissues, and then seeing how patients do afterwards and how we can improve their outcomes with outcomes research and obviate needs for things like biopsies with blood tests and liquid biopsies, biomarkers and biomarker discovery really make up the pillars of the research of the matrix program.

[00:17:48] Erin Spain, MS: You've mentioned so many interesting things, using nanoparticles to deliver drugs, you're doing robotic surgeries to remove some of these organs. Tell me about the future of transplantation and where do we see things going?

[00:18:01] Satish Nadig, MD, PhD: The future is now. For many, many years, we were using the same anti rejection, in fact, the current standard of care is the same anti rejection medication that were developed by my mentors in the 1970s and 80s. The same preservation solutions that were used in the 1980s, largely the same techniques that were developed in the 1990s. And then for a long time, nothing ever moved. Until now. We hear about it on the news, xenotransplantation. We hear about the government looking at the United Network of Organ Sharing and seeing how they can build in more artificial intelligence. We went from two years ago, here at Northwestern, very little percentage of our donors being done robotically to 70 percent or more being done robotically. Trials that I mentioned about nanotherapy that we're on the forefront of, engineered tissues, I told you already about our tolerance trials. We run over 90 clinical trials in the Conference of Transplant Center, so the future is now. We are in the most exciting time of transplantation that I can imagine or remember, and I often feel somewhat like some of the early pioneers, when they were trying to experiment with transplantation. Transplantation is not an experiment anymore. Making it better is what we are dedicated to doing. So we're really in that paradigm shifting renaissance of transplantation right now.

[00:19:14] Erin Spain, MS: As we wrap up today, for those listening, Tell us why, why should they consider Lurie Children's and Northwestern Medicine if someone in their family needs this type of procedure?

[00:19:25] Juan Caicedo, MD: We have been doing transplant for liver transplantation, probably, close to 30 years and living donors also more than 25 years doing a living donor liver transplant. In living donor liver transplantation here at Northwestern, we were the first center in the world that performed a minimal invasive approach for living liver donation. The same for kidney transplantation even longer. And our outcomes are excellent. We are decreasing the mortality on the waiting list to our patients, and we're improving the access to transplant care to these patients.

[00:20:01] Satish Nadig, MD, PhD: I just think it's really important to note that Northwestern and Lurie Children's is really on the forefront of the paradigm shifting work that's happening in transplant. I always tell people that, you know, when the end of my career, if I look back and I have transplanted a lot of people, that's great. I mean, I would be ecstatic with that. But on top of that, if I look back and say, wow, we changed the way transplant was done, I would be even more satisfied

[00:20:27] Erin Spain, MS: Fantastic. Well, thank you so much, Dr. Satish Nadig and Dr. Juan Carlos Caicedo For coming on the show for all of your insights today into this really state of the art program. Appreciate it.

[00:20:39] Satish Nadig, MD, PhD: Had a great time. Appreciate it.

[00:20:40] Juan Caicedo, MD: Thank you so much, Erin.

[00:20:41] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit LurieChildrens.org.



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