Pediatric Kidney Transplant FAQs for Patients

What is a kidney transplant?

It’s an operation in which the function of diseased kidneys in one individual (the recipient) is replaced with a healthy kidney from another individual (the donor). Usually the donor kidney comes from a living donor, typically a family member or friend. In some cases, the kidney is taken from someone who has recently suffered brain death.

Why is a kidney transplant performed in a child?

Transplantation is reserved for children whose kidneys are so damaged that dialysis is, or will be, needed for survival. Transplantation offers a longer-term solution that gives the child the prospect of improved health, greater independence and a more normal life

How is the decision made between continuing dialysis and transplantation?

The decision to refer a child for consideration as a transplantation candidate is usually made by the child’s nephrologist. Sometimes parents request the evaluation.

The evaluation itself is an elaborate and detailed process, beginning with a complete review of the child’s medical records by the Pediatric Kidney Transplant Team. In the course of a full day of appointments, not only are various medical tests run (see How is my child placed on the waiting list for a new kidney?), but the child and parents also meet with the entire team, including surgeon, nephrologist, child life therapist, social worker, transplant coordinator and family advocate. In addition to medical evaluation, this initial meeting addresses the social and family requirements of transplantation, such as extended-living arrangements before and after the procedure for patients from outside the area (see Where to Stay).

After the initial day of evaluation, the Transplant Selection Committee meets to determine whether the child is a suitable candidate, develop a timetable and select a donor or donor source.

Until the transplant surgery can be performed, can my child receive dialysis at Lucile Packard Children's Hospital Stanford?

Lucile Packard Children's Hospital Stanford offers comprehensive outpatient pediatric dialysis services, based in the West Building of the hospital. The hospital has a dedicated Pediatric Renal Dialysis Unit for children with kidney failure. The dialysis unit also has a home peritoneal dialysis program, which provides support for home pediatric peritoneal dialysis.

Where do donor kidneys come from?

They come from two sources. The first is living donors, from whom a single kidney is removed. The best donors are usually family members who provide a close genetic match, usually a parent. On occasion a good match is found with an unrelated individual. Donors are able to lead normal, healthy lives with the single remaining kidney.

The second source is individuals who have recently suffered brain death. They have agreed to become organ donors before death, or their organs have been donated by their spouses or parents after death. In most cases, a single kidney is transplanted into a recipient, so that each deceased donor provides a kidney to two recipients.

I understand that Lucile Packard Children's Hospital Stanford’s Kidney Transplant Program prefers living donor transplants. Why?

This program transplants more kidneys from living donors than the average for other centers in the United States. The data show that deceased-donor recipients suffer twice as many episodes of acute organ rejection as do living-donor recipients in the first three years following kidney transplantation. This finding leads to the expectation that deceased-donor recipients will be more at risk of transplant rejection over the long term than will living-donor recipients. As a result, the Kidney Transplantation Program prefers living-donor transplants

Who is the most likely living donor for my child?

A parent is usually the best match, although sometimes an aunt or uncle may become a donor. Occasionally, unrelated donors with a good match can be found among people who are emotionally close to the child, such as friends of the family. Siblings under the age of 21 are not candidates for transplantation into infants and children because they are too young to consent legally to the procedure.

How can I find out whether I am a suitable donor for my child?

If you are willing to donate, you will undergo a series of tests and screenings to determine whether your child and you are compatible. If you are, then more tests are conducted to determine the health of your kidneys and the long-term effects of donation.

Is there an ample supply of deceased-donor kidneys?

The number of children who need kidneys exceeds the number of kidneys available. At any given time, more children are in need of a kidney than there are deceased-donor kidneys to go around.

How are deceased-donor kidneys allocated to children awaiting transplant?

Within Northern California, kidneys are distributed to recipients by waiting time — the longer the child has been waiting, the higher he or she is on the list and the sooner he or she is likely to receive a kidney. Since this system favors older children over younger, years are added to the wait time based on the child’s age.

In case a suitable kidney becomes available outside Northern California, UNOS — which tracks kidneys across the country — notifies any potential recipient of an organ that is a perfect or near perfect match.

How long will my child have to wait for a transplant?

There is no one answer to this question. If a living donor is available, the wait may be only weeks. If no living donor can be located and a deceased-donor kidney is needed, the wait may be years — on average, three to five years. Blood type is an important determining factor, since recipients with common blood types have a better chance of being matched faster to a donor kidney than recipients with rare blood types. During the time before surgery, the child is managed closely by his or her physicians and the Pediatric Kidney Transplant Program team.

How is my child placed on the waiting list for a new kidney?

First, the Kidney Transplant Program team has to determine whether a transplant is necessary for your child. Testing may include:

• Blood tests 
• Diagnostic tests to determine the type and severity of your child’s kidney dysfunction 
  • Renal ultrasound
    A noninvasive examination to create a picture of the kidney with sound waves. This test determines the size and shape of the kidney and can detect masses, stones, cysts, blockages or other abnormalities.
  • Kidney biopsy
    Removal of a sample of kidney tissue by needle or during surgery for examination under a microscope.
  • Magnetic resonance angiogram (MRA)
    Essentially an MRI that allows the physician to see the blood vessels in the abdomen to which the transplanted kidney will be attached.
  • Nuclear medicine scan
    A very small amount of a radioactive material that accumulates in the kidney is injected, then images of the kidney are taken with a special camera that detects radiation. This short-lived radiation is harmless, completely leaving the body within a few hours.
  • Voiding cystourethrogram (VCUG)
    An x-ray image of the bladder and urethra (the tube that transports urine outside the body) while urine is being expelled. The bladder and urethra are injected with a special dye to make a clear image.
• Psychological and social evaluation of the child (except for infants and very small children) and of the family

If a transplant is indicated, the team determines the urgency of your child’s need. This battery of tests analyzes the child’s general health, including heart, lung and kidney function; nutritional status; and the presence of infection.

Other tests are conducted to assess the risk that the donor organ will be rejected. These tests may include:

• Blood type
  Just as in blood transfusions, kidney donor and recipient must have the same blood type. Otherwise, a severe, possibly fatal allergic reaction will result.
• Human leukocyte antigens (HLA)
  This test identifies the degree of tissue match between the donor kidney and the recipient and helps measure the likelihood of a successful transplant.
• Panel reactive antibody (PRA)
  PRA measures the recipient’s sensitization to certain antigens and checks the child’s risk of mounting a strong immune response to the transplanted kidney. If the PRA score is high, the child’s blood serum is checked against cells from the donor kidney to assess the potential for rejection.
• Viral studies
  These tests screen for viruses, such as cytomegalovirus (CMV), human immunodeficiency virus (HIV) and Epstein-Barr virus (EBV), to determine the protocol for viral prophylaxis following surgery and to assess the need for special medical management.
• Cytotoxic cross-matching
  Cells from the donor are mixed with blood serum from the recipient to gauge the degree of reaction. If the reaction is positive, rejection is likely, while a negative cross-match indicates compatibility.

What is kidney transplant rejection?

Rejection results from the body’s normal response to foreign objects, microorganisms or tissue. The immune system perceives the transplanted organ as a threat and attacks it with antibodies. As a result, living with a transplant requires medications that suppress the immune system and keep it from attacking the new kidney.

What are the symptoms of kidney transplant rejection?

In many patients, the only initial indicator is an elevated blood creatinine, which can be detected only with a laboratory test. Other symptoms can include:

• Fever 
• Tenderness over the kidney
• High blood pressure
• Decreased urine output
• Sudden weight gain
• Malaise — that all-over, flu-like feeling

Should rejection symptoms appear after your child has undergone a transplant, call the transplant coordinator.

What is done to prevent kidney transplant rejection?

Medications are given to suppress the immune system (immunosuppressants) and lower the risk of rejection. The Pediatric Kidney Transplant Program team fashions a regimen of medications for each individual child and regularly monitors the child’s response to the drugs. Adjustments are made in medication type and dosage depending on the child’s condition.

Does immunosuppression have side effects?

Yes. All immunosuppressants reduce the body’s ability to fight infection. Particularly in the first few months following transplantation, when medication doses are highest, the child is especially susceptible to oral yeast infection (thrush), herpes and respiratory viruses.

Steroids, which have been a mainstay of immunosuppression for over four decades, cause a variety of side effects, including slowed growth, abnormally high blood fat levels, high blood pressure, softened bones, slow wound healing, acne and a puffy appearance.

Anti-rejection medication side effects are a particular issue with adolescent transplant recipients. Teenagers are in a difficult time of life, when appearance, group acceptance and peer pressure are highly important. Adolescents taking immunosuppressant medications perceive themselves as looking abnormal and may fail to take their medications. As a result, teenage kidney transplant recipients have the highest failure rate of all age groups.

Is there an alternative to standard immunosuppression therapy?

Yes. Lucile Packard Children's Hospital Stanford’s Pediatric Kidney Transplant Program has developed an anti-rejection regimen that avoids steroids and their side effects altogether. Your child will be evaluated to see if she or he can use the steroid-free protocol. Many of the children we see can use the steroid-free protocol and are spared the side effects of steroids.

Once my child has a transplanted kidney, what are his or her long-term prospects?

Transplantation will almost certainly improve your child’s health. Still, living with a transplant is a life-long process. The need for anti-rejection medications continues, and frequent follow-up visits with the Pediatric Kidney Transplant Program team are required to monitor the child’s progress. It is critical that you know the signs of rejection and look for them every day. When your child is old enough to live independently, he or she will need to learn how to administer anti-rejection medications.