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Melanie Cole (Host):  There's no handbook for your child's health, but we do have a podcast featuring world-class clinical and research physicians covering everything from your child's allergies to zinc levels. This is Kids' Health Cast by Weill Cornell Medicine. I'm Melanie Cole. And today we're discussing pediatric kidney transplantation. Joining me in this panel are Dr. Rebecca Craig-Shapiro. She's an Assistant Professor of Surgery at Weill Cornell Medical College, Cornell University, and an Attending Surgeon at New York Presbyterian Weill Cornell Medical Center and Dr. Juhi Kumar. She's an Associate Professor of Clinical Pediatrics at Weill Cornell Medicine, and she serves as the Medical Director for the Pediatric Kidney Transplant Program at Weill Cornell Medicine. Doctors, I'm so glad to have you join us today. And Dr. Kumar, I'd like to start with you. If you would, tell us some of the disease processes that lead to end-stage kidney failure in infants and children. People don't think about kidney failure in such young children. Tell us a little bit about some of the characteristics and why do children need a kidney transplant?

Juhi Kumar, M.D., MPH (Guest): Sure Melanie. Thank you for having me. So, the causes of chronic kidney disease and kidney failure in children can be broadly divided into two categories. One is structural defects of the kidney formation, also known as congenital anomalies of the kidney and urinary tract and the other are glomerular conditions, which actually affect the filters of the kidney. In children, there's a study going on, it's called Chronic Kidney Disease in Children, and it is the largest study of CKD patients in North America and it has enrolled about 1100 patients. And in this study they found that 70% of the children who had chronic kidney disease was due to abnormal formation of the kidneys.

So, conditions such as obstruction to the flow of urine, malformation of the kidney, small kidneys, or reflux nephropathy. The other 30 to 35% were glomerular conditions such as focal segmental glomerulosclerosis, hemolytic uremic syndrome, polycystic kidney disease and C3 glomerulonephropathy. And then if you look at data from the scientific registry of transplant recipients, out of all the kids that are waiting for a kidney transplant, almost 37% of them have congenital anomalies of the kidney and urinary tract as the primary cause of their disease. And about 14% have some sort of glomerular nephritis.

Host: Such an interesting topic we're discussing here today. And thank you, Dr. Kumar for telling us about it. Now, Dr. Craig-Shapiro, I think one of the big things that parents want to know is how are donor kidneys found for children. How can a parent find out if they're a suitable donor for their child? Explain a little bit about the donor situation for kids.

Rebecca Craig-Schapiro, M.D. (Guest): Sure. Well, first I want to thank you for having me here today. I'm very happy that we get to talk about this topic. So, once we know that the transplant is needed for a child, we try to find a new kidney as soon as possible. This is because we know that pediatric transplant recipients show better growth, improved neurocognitive development and academic performance, and a better quality of life compared to children treated with dialysis. So, to answer your question, how do we find a kidney? There's two types of donors. A kidney can come either from a deceased donor. So, a person that's just died or from a living donor. To get a deceased donor transplant, you must be added to the national kidney waiting list. And these donors of course, are screened very carefully because we want to ensure that a kidney is going to be a good kidney and a good immunologic match. Generally, however, for children, we encourage living donation. And so in this case, the donor is typically a family member or a friend. Parents are frequently the best donors because they will often have the same blood type and they'll be a good immunologic match. But some children get kidneys from altruistic donors or good Samaritan donors, people they don't even know.

And we have helped children and their families create websites so that they're able to facilitate getting a kidney transplant. One of the advantages of living donation of course, is that there's no waiting list. There's no waiting for a kidney to become available. And so the surgery is scheduled at a time that's convenient for everyone. It can be planned around school, other activities, and it's not unpredictable. And after donating a kidney, a donor can then go on to lead a normal, healthy life with their one remaining kidney. Another advantage of living donation, besides the not having to wait on a list, is that typically kidneys from living donors will last longer than kidneys from deceased donors.

So, just to give you a sense of some of the numbers, about a third of kidney transplants for children are from living donors. It's actually something that's a little bit of concern in the transplant community as rates about a decade ago were closer to 50% and living donation is really the best option for access to organs and the potential for optimizing the outcomes of these children. And about 30% of children are transplanted preemptively, meaning that they never have to be on dialysis before they get a transplant.

Host: Well, that would certainly be ideal. Now, Dr. Kumar, tell us, because we're going to talk about what that process is like with Dr. Craig-Shapiro. When the family comes to the transplant center at Weill Cornell Medicine, but tell us about pre-transplant interventions. Speak to parents about that medical management, what's involved in the evaluation, patient selection and preparing that patient for their transplant.

Dr. Kumar: Sure. So, in my mind, getting a patient and a family ready for a kidney transplant has two important components. One, is the medical readiness and the other is emotional readiness. The family has to be, and the patient have to be prepared to hear about the transplant and the process. So, what we usually do, we start talking about the transplant process early on in chronic kidney disease. So, most of the pediatric patients who have chronic kidney disease, they are known to us for a very long time. We've been taking care of them since their chronic kidney disease started. And in some cases, this is as early as they were born. So, we have quite a good relationship with them.

So, we try to use that understanding between us to have the parents ready to listen about the transplant process and to make them slowly understand that ultimately your child will need a kidney transplant. And we slowly start educating them about the transplant evaluation process, the transplant surgery process and what it would look like after that. So, that is the emotional readiness piece. And then there's medical readiness piece to it, which is pretty comprehensive. And the way it starts is we refer the patients to a transplant center, in our case to Dr. Shapiro and her team, when the GFR or the kidney function becomes less than 30 ML per minute.

And then there's a whole slew of tests, medical tests such as blood group, HLA antibody typing, coagulation profile, kidney function, liver function, your hemoglobin, testing for certain viral infections and serologies like CMV, EBV, hepatitis A, B, and C, the measles, mumps, rubella, and varicella, HIV, tuberculosis.

So, you screen for all these things at the time of the transplant evaluation. You have to make sure that their heart is ready for the transplant. So, you do an EKG and echo to assess cardiac function, as some of these patients have longstanding high blood pressure. So, you want to make sure that that has not affected their cardiac function.

You want to make sure that their blood vessels are okay to hook up the new transplant. So, you have to make sure there's no obstruction to the flow of the blood in the vessels. So, you may to do an ultrasound or a CT scan to make sure everything is good there. Then very importantly, as I'd mentioned, a fair number of these kids have developmental abnormalities of the bladder also, so the urinary bladder may not be functioning a hundred percent normally, so they need to be followed very closely by our urology team. And we need to make sure that the bladder is ready to receive a new kidney and ureter. So, we have to have assessments of bladder function and if any surgical correction is needed for that, that has to be done prior to even starting the transplant evaluation process.

Then another important aspect is immunizations. So, we have to make sure that all the routine immunizations are complete, that the patients have received all their vaccines prior to transplant, specially what are known as live vaccines because after transplant, we cannot give them the live vaccines and the live vaccines are like measles, mumps, rubella, the varicella vaccine, and the rotavirus vaccine. So, we have to ensure that the kids are vaccinated and they have adequate antibodies against these infections, because if they happen to get these infections after transplant, they can become very sick with them. Then the other important piece is a dental visit to make sure there's no cavities or no infections brewing there that needs to be taken care of or any loose teeth that need to be taken care of. That's the medical piece of it.

Then another very important piece is the social clearance. We have to make sure that there's a adequate caregiver present for this child at all times after they go home, after the transplant, that the caregivers are able to come for the follow-up, which is pretty intense after transplant, they have safe housing, there are no mental health concerns from the caregiver or there's any food insecurity. So that's all involved in the social clearance of the transplant patient and the family. And then of course there's the financial clearance for insurance and to make sure that they will be able to get their medications.

Host: Wow. That's such a comprehensive list you just gave us Dr. Kumar. So, Dr. Craig-Shapiro, I'd like you to go over for us, the process, what it looks like when the patient gets to your transplant center, as far as that wait list. And also while you're telling us about the wait list and what's involved, cause Dr. Kumar just went into medical management pretty in depth. So, tell us a little bit about the procedure itself. What are some of the questions that parents really want to know?

Dr. Craig-Shapiro: Sure. So I think as you heard from Dr. Kumar, the transplant evaluation process is a very detailed process and our process here at Cornell is very similar to the process across all transplant institutions. Usually when you come to our transplant center, the way we start is that the evaluation starts with a half day of appointments so, the child and their parents can meet the entire team. So, that includes the transplant nephrologist like Dr. Kumar, a surgeon like myself, they'll meet a child life therapist, a social worker, a transplant coordinator who's a very crucial part of the process. Dieticians among others. And this half day is really about educating the child and the parents about transplantation, just as much as it is about evaluating the child for transplantation.

So, after this evaluation and any testing that needs to be done, like you just heard from Dr. Kumar, then usually really the transplant selection committee will meet and they'll review everything to determine if the child's suitable candidate to get a kidney transplant. And if so, then the child will be put on this deceased donor waiting list. And when the child's put on the deceased donor waiting list, we let the family know that they can receive a phone call anytime, day, night, 2:00 AM Sunday, Christmas, whenever a suitable donor becomes available. So, they should be available. And we don't usually have too much advanced notice. So, when that phone call comes, it's usually to say, come into the hospital then, or soon thereafter to have surgery. There's about 1,500 children in the United States on the waiting list for a kidney transplant and about 700 children get a kidney transplant each year.

And, because renal failure and dialysis can cause substantial developmental delays in children, candidates that are placed on the waiting list before their 18th birthday are given additional consideration in the kidney allocation. So, what this means is that children get special priority on the waiting list to try to help them to get a very good kidney faster.

And so just some numbers to kind of put this in perspective, of children that were put on the waiting list in 2016, three years later, about 50% had received a deceased donor transplant and about 25% had received a living donor transplant and the remaining were still waiting. So, this is in contrast to adults, where we talk about how once you go on the waiting list, the average time can be five to eight years of waiting.

And then also keep in mind that you can still look for a living donor while you wait on the deceased donor list. And then you can have your transplant using whichever kidney becomes available first. In terms of the second part of your question was what's the surgery like, what's the procedure like, generally a child that's older than two years old can get a kidney from an adult.

So, many centers will say that they want the child to be greater than 10 kilograms or 22 pounds before transplant. But children that are smaller can be transplanted. And during the surgery, the kidney is usually placed on either the right side or the left side of the lower part of the abdomen. In some small children, sometimes we have to put the kidney in the middle of the abdomen. The child's own kidneys are usually not removed. So, your native kidneys live in your back under the ribs and those stay in place. And the surgery usually takes three to four hours. And the stay in the hospital afterwards is generally about a week.

Although sometimes it can be a little bit longer. One important question that frequently parents ask is, well, when will that new kidney start to work? And a kidney from a living donor usually starts to work immediately. Meaning it's making urine in the operating room. A kidney from a deceased donor sometimes can be a little bit slower. So, sometimes these kidneys are sleepy or we say they're a little bit shocked from the surgery and they need a little bit of time to recover before they start working.

Host: So, fascinating what you doctors are doing, really blows me away. So, Dr. Kumar, if you would, and we don't have a lot of time left, but if you would speak a little bit about the multidisciplinary approach, who's involved after this procedure and Dr. Craig-Shapiro mentioned a few people that are involved before the procedure, nutritionists and such. Tell us a little bit about who's involved in after and what's involved in that post-transplant care.

Dr. Kumar: So, just as the pre-transplant process sounds very involved and intense, so is the post-transplant care of these patients. So, the transplant surgeons, they do the procedure, but they also follow. Dr. Shapiro follows our patients after the transplant also to make sure that they are doing okay with the surgical incision and the transplant is working okay. We, as nephrologists follow these patients very closely. After they are discharged from the hospital, the followup schedule is something like twice a week for the first three weeks, then every week for the next month and then every other week for another month. And then once a month, till the first year of transplant, if there's any problem, like they get a fever or they get an infection, or the creatinine bumps up, then they need to come in to the hospital or they need to come and see us even more frequently. And at every visit, I usually see my patients with my social worker. So, the social worker, sort of screens the family for how they're coping with the new transplant, how the family is holding up, how the parents are holding up.

Are there any issues they are dealing with. She sort of screens them for any mental health as well, as social issues. And then there's the medical aspect of it. So, we monitor for how much urine they're making, how much fluids they are drinking. Are they taking their medications on time? Are they having any side effects from the medications? We do all their blood and urine tests to make sure that kidney function, the creatinine is getting as close to normal as possible. We make sure that the medication level or the drug levels are where we want them to be at, at a certain point in the transplant and then, we also want to make sure that the children are taking their medications regularly, especially in our adolescent patients. It's a big problem. Non-adherence to medications is a big problem. After the transplant, most kids start feeling okay. They feel they have good energy levels. They feel okay. So, sometimes they think, why do I need to take all these medications?

And they very often start skipping medications. So, that is another important part of followup to make sure that they taking their medications on time and not skipping doses. We have a administrative assistants who keep calling them all the time to make sure that they have their medications, that they took it on time. The day prior to them coming for the appointment, make sure they're not running out of medications, that we have our clinical nurse who calls to make sure that they have the adequate supply of medication. And they're not short of any medication. So, it remains a very involved process, as it says, it takes a village to keep this transplant going for the family. So that is in brief how we take care of it.

Host: Well, it certainly does take a village to keep this going. And it's an amazing feat that you're able to do for our children. As we wrap up, Dr. Craig-Shapiro, I'd like to give you the last word here for the children, what is life like after the transplant? What about things like sports and schools and Dr. Kumar just mentioned adolescents. We all know what they're like. So, tell us what living with a transplant is like for the family.

Dr. Craig-Shapiro: That's a great question. You know, we're so focused on getting the transplant, but what's life like afterwards. As Dr. Kumar mentioned, they're very frequent checkups after the transplant. Of course immediately after the surgery, physical activities will need to be limited until everything is healed. So, that generally means no sports or rough playing for a couple of months, but we recognize that exercise and physical activity are important parts of a healthy lifestyle and keeping the kidney healthy. So, we encourage regular activity. And after that initial healing period, children are free to go back to most sports.

In terms of school, most children will return to school by about two months after the transplantation. Sometimes people ask about pets, pets are okay. You can have pets. The key thing is just washing your hands and keeping your pets healthy and clean. And so I think what we see for our kids that are transplanted is that after that initial recovery period, they really start to feel better.

They have more energy, they eat better, they grow better. You know, as Dr. Kumar mentioned, it takes a village because it is a complex process and the transplant comes with a lot of new responsibilities, but I think it's a really amazing thing that we're able to offer our kids that have renal failure.

Host: Absolutely. And Doctors, thank you so much for joining us today and giving us such a comprehensive explanation of what's involved in pediatric kidney transplant. Thank you again. And Weill Cornell Medicine continues to see our patients in person as well as through video visits. And you can be confident of the safety of your appointments at Weill Cornell Medicine.

That concludes today's episode of Kids' Health Cast. We'd like to invite our audience to download subscribe, rate, and review Kids' Health Cast on Apple podcasts, Spotify and Google podcast. For more health tips, please visit weillcornell.org and search podcasts. And don't forget to check out our Back to Health. I'm Melanie Cole.