Contemplating your child’s kidney transplant may be scary, but the more you know about the procedure and its benefits, the more prepared you will be--medically and emotionally, says Dr. Juhi Kumar, Associate Professor and Medical Director for the Pediatric Kidney Transplant Program at Weill Cornell Medicine.
“Most of the pediatric patients who have chronic kidney disease are known to us for a very long time. We've been taking care of them since their chronic kidney disease started. In some cases, this is as early as they were born. So, we have quite a good relationship with them,” Dr. Kumar says.
This strong patient-provider foundation allows Dr. Kumar and the WCM pediatric kidney transplant team to help parents understand that their child will eventually need a new kidney. “We slowly start educating them about the transplant evaluation process, the transplant surgery process and what it looks like afterward. That is the emotional readiness piece,” Dr. Kumar says.
Medical readiness begins with a referral to WCM’s transplant center. Extensive blood testing follows to determine a child’s blood type, kidney, liver and bladder function, history or existence of certain viral infections like hepatitis A, B, or C, measles, mumps, rubella, varicella, HIV, or tuberculosis, as well as immunizations. “If kids get one of these infections after transplant, they can become very sick,” Dr. Kumar says. Children must also have a dental check-up to ensure they have no cavities, infections, or loose teeth that need pulling.
A crucial part of preparing children and parents for kidney transplantation is introducing them to WCM’s entire care team, which includes the transplant nephrologist, surgeon, child life therapist, social worker, transplant coordinator, and dietician, says Rebecca Craig-Schapiro, M.D. Ph.D., Assistant Professor of Surgery. “This is really about educating the child and the parents about transplantation, just as much as it is about evaluating the child for transplantation,” Dr. Craig-Schapiro says.
If the transplant selection committee determines that a child is a suitable candidate for a kidney transplant, then they add the child to 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,” Dr. Craig-Schapiro says. “When that phone call comes, it's usually to say, ‘come into the hospital to have surgery,’” she says. “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,” she adds.
Kidney transplant surgery usually takes three to four hours, and recuperation, about a week in the hospital. Although a kidney from a living donor usually starts working immediately, a kidney from a deceased donor may be a little bit slower, Dr. Craig-Schapiro says. Overall, however, children who receive kidney transplants show better growth, improved neurocognitive development and academic performance, and a better quality of life compared to children treated with dialysis.
Post-transplant care is critical. Following discharge, patients must see their doctor twice weekly for the first three weeks, then weekly for the next month, then every other week for another month, and then once a month for the first year of transplant.
“We follow these patients very closely, monitoring how much they are drinking and how much urine they're making, whether they are taking their medications on time or having any side effects from them, and testing their blood and urine to make sure their kidney function is getting as close to normal as possible,” Dr. Kumar says.
Medication adherence is critical following transplant, and doctors regularly check patients’ blood medication levels to make sure they are not skipping doses. “Non-adherence to medications is a big problem,” Dr. Kumar says. “After the transplant, most kids start feeling okay. Sometimes they think, ‘why do I need to take all these medications?’” Dr. Kumar says. To prevent medication lapses, the transplant team’s clinical nurse calls patients to make sure that they have the adequate supply of medication. “It takes a village to keep this transplant going for the family,” she says.
As part of follow-up, a social worker checks in with the family to see how everyone is coping with the new transplant. “If there's any problem, like a fever or infection, then the patient needs to come into the hospital or see their doctor more frequently,” Dr. Kumar says.
Patients cannot play sports or do any roughhousing for a couple of months after surgery. “We recognize that exercise and physical activity are important parts of a healthy lifestyle and keeping the kidney healthy. So, we encourage regular activity,” Dr. Craig-Shapiro says. “After the initial healing period, children are free to go back to most sports.” Most children can return to school by about two months after the transplantation.
After that initial recovery period, kids start feeling better. “They have more energy, they eat better, they grow better,” Dr. Craig-Shapiro says. “The transplant comes with a lot of new responsibilities, but I think it's a really amazing thing that we're able to offer.”