When a child has end-stage kidney (renal) disease, called kidney failure, a transplant may be the most effective treatment. Most kidney transplants in children are successful, and kids can go on to enjoy normal, healthy lives.
At Yale Medicine, our experts are highly skilled and sensitive to the unique needs of children and their families during this difficult time. Our highly skilled pediatric surgeons, nephrologists, social workers and dietitians all work together as a team. And we have the added benefit of communicating with our adult transplant program when needed.
What causes kidney failure in a child?
The most common causes of pediatric kidney failure, or end-stage renal disease, are birth defects and genetic conditions. “For example, children can be born with kidneys that didn’t develop right or had a blockage along the way and developed an infection,” says Olivera Couloures, MD, a Yale Medicine pediatric nephrologist.
Less commonly, older children and teenagers may develop kidney disease as a result of an infection, a physical trauma or a systemic condition such as lupus or diabetes.
Most pediatric kidney transplant recipients are teenagers, but the surgery can be done on children as young as a year old and as small as 22 pounds. Babies who are below those benchmarks may be considered for transplants case by case, or they may receive kidney dialysis until they grow a bit more.
What are the symptoms of pediatric kidney disease?
Congenital abnormalities of the kidneys are sometimes discovered in utero, so doctors can know even before a baby is born that he or she may need a kidney transplant.
Other times, those abnormalities are not detected early, and children begin to develop symptoms of kidney disease over months or years. These symptoms can include:
“These symptoms can be very subtle,” says Dr. Couloures. “Sometimes it’s just a general sense of not feeling well, and tests are needed to diagnose the problem.” These tests can include urine samples, blood samples, and imaging tests, such as ultrasound or computerized tomography (CT) scans. Doctors may also use a needle to remove a tiny sample of kidney tissue (a biopsy) to examine under a microscope.
Kidney failure can also be caused by diseases involving other organs, such as lupus, diabetes or other autoimmune conditions. In those cases, children may experience symptoms not specific to kidney function, including skin rashes or joint pain.
How are children prepared for a kidney transplant?
Once doctors know that a transplant is needed, they try to find a new kidney as soon as possible. “We work hard as a team on trying to make the diagnosis soon enough so that the patient doesn’t have to go through a period of dialysis,” says Dr. Couloures.
Pediatric transplant coordinators speak with the child’s family about the possibility of a living donor. A family member, a friend or an altruistic donor may be able to give up a kidney. If a match is made based on blood and tissue type, this reduces the time a child has to wait for surgery.
It takes less than a month on average to evaluate and approve patients for surgery. This process involves appointments with key members of the transplant team and lab tests to ensure that the children are healthy enough for surgery, as well as counseling for the patients and their family about the surgery itself and the recovery process.
“We make sure that the family understands what it means to receive an organ and take care of it,” Dr. Couloures says. “And we look for potential obstacles to following through with the post-transplant plan.”
Once the workup is complete and the case discussed by the team, the child is put on a waiting list for a kidney from a deceased organ donor. “We let the family know that they can expect a call anytime—day, night or weekend—and that they need to be available,” Dr. Couloures says.
If a living donor is cleared by the donor advocate team, then a date is discussed with the donor and family, and the surgery is scheduled. While waiting for the surgery, the child continues to receive offers from the donor pool with pediatric priority.
Even when a family does receive a call, the kidney still isn’t guaranteed. A last-minute blood test, called cross-matching, is performed to ensure that the patient’s body won’t reject the new organ. “Sometimes the child gets to the hospital, and in the final stages something doesn’t work out,” Dr. Couloures says. “About one out of every three calls results in an actual transplant.”
Donated organs are screened carefully, and children will only be offered kidneys that are healthy and a good match for them. “Not all aspects of a person’s health history are going to affect the quality of their kidneys,” Dr. Couloures says.
How is a pediatric kidney transplant performed?
Kidney transplant surgery lasts two to three hours and is performed under general anesthesia. Transplant surgeons make an incision in the lower abdomen, where they connect the new kidney by attaching it to blood vessels and the bladder. The nonworking kidneys are usually left in place, unless they are causing problems such as high blood pressure or protein leak.
The incision typically heals quickly, and the new kidney begins working within a few hours. (In the case of a living donation, it is usually within minutes.) In some cases, a drain may be used for a few days to collect fluid and watch for leaks. If there are no complications, most patients go home from the hospital within a week and can resume a normal diet within a few days.
The transplant team will prescribe medications to help manage pain after surgery and to prevent infection and facilitate the body’s acceptance of its new organ.
What happens after a pediatric kidney transplant?
Kidney transplant recipients need frequent checkups for the first few months after surgery. Then their appointments become more spread out: once a month for the first year, then once every three months. Lab tests performed at these visits can show whether the kidney is still working the way it should.
The team also uses those checkups to help and teach patients. People who receive a kidney transplant have to take different medications every day—some for the rest of their lives—to keep their bodies from rejecting the organ.
“We try very hard to make sure the patient understands that this is a lifelong commitment to a minimum of three medications every day, twice a day—never to be forgotten,” Dr. Couloures says.
Parents should make sure their children stay on top of this important part of their care. “Teenagers do forget,” Dr. Couloures says. Young adults who are moving away from home for the first time or switching doctors or insurance plans are also at risk for medication slip-ups. And even a few missed doses could put a patient at risk for organ rejection.
As for the donor, the procedure is a minimally invasive surgery, and most donors are ready for discharge a few days later.
What makes Yale Medicine's approach to pediatric kidney transplants unique?
We have a large adult transplant program, and one of the largest, solid organ pediatric programs in the region. “The surgeons take care of our adult and pediatric patients, so they are a great resource to have,” says Dr. Couloures. The adult and pediatric programs also share a transplant nephrologist, who is involved in the treatment and post-surgical care of every patient.
“Pediatric transplantation is all about teamwork,” says Manuel Rodriguez-Davalos, MD, a Yale Medicine transplant surgeon. “Pediatric specialists, including surgeons and nephrologists, transplant coordinators, social workers, transplant register dietitians and child life specialists, work in harmony for the sake our kids.”
Children with congenital defects that affect multiple organs also have access to Yale Medicine’s combined kidney and liver transplant program. And because Yale Medicine is a cutting-edge research institution, doctors have access to sophisticated testing and lab equipment to assist with diagnosing and treating particularly challenging cases.