When Your Child Needs a Kidney Transplant

Being told that your child needs a kidney transplant may leave you feeling scared, angry, or confused. You might not fully understand why your child needs a new organ or where it will come from. Just thinking about the months ahead may fill you with dread and worry.

But, fortunately, most kidney transplants are successful. Many kids who undergo these procedures go on to live normal, healthy lives once they recover from surgery.

In the long term, kids need to take medicines to help prevent complications and have regular checkups to monitor their new kidney function.

About the Kidneys

Kidneys are bean-shaped organs located near the middle of the back, just below the ribs. Most people have one kidney on either side of their backbones. Kidneys help to clean the blood by removing things like excess fluids, salts, and waste products from the blood. Kidneys also release hormones that help regulate blood pressure, create new red blood cells, and maintain calcium levels for healthy bones.

Each day, nearly 425 gallons (1,609 liters) of blood pass through a person’s kidneys. Inside each kidney are about a million tiny structures called nephrons that sift the blood and remove about 2 quarts (1.9 liters) of fluids and waste products. The fluid and waste is turned into urine and stored in the bladder to be released when someone urinates (pees).

If the kidneys stop working properly, harmful waste products and excess fluid build up in the body. Blood pressure may also rise and the body might not make enough red blood cells. This is called kidney failure. If left untreated, it can quickly become life-threatening.

Causes of Kidney Failure

Diabetes and high blood pressure are the most common causes of kidney failure in adults. But in young people, it’s usually the result of:

• Genetic diseases. Conditions that run in the family can affect the kidneys. One example is polycystic kidney disease, in which normal kidney tissue is replaced by fluid-filled sacs.
• Glomerular diseases. These conditions damage the tiny filtering units in the kidneys (called glomeruli).
• Birth defects. Defects of the kidneys or urinary tract can prevent the kidneys from working normally.

Treating the condition that’s causing the kidney failure can sometimes help heal the kidneys. But this isn’t possible if a person has lost more than 15% of his or her kidney function. When this happens, doctors would recommend either:

• a kidney transplant, which places a new (donor) kidney in the body
• dialysis, a therapeutic process that does the work of the kidneys by artificially cleaning the blood

For children who are good candidates for transplant surgery, it can be the better option. Since dialysis treatments are usually needed daily or multiple times a week, they can interfere with a child’s routine and make attending school or traveling difficult. Successful kidney transplants may make it easier for kids to live as they did before developing kidney failure.

Different Types of Kidney Transplants

There are two kinds of kidney transplants: a living-donor transplant and a non-living-donor transplant. The difference between the two is based on who donates the new kidney.

As the name suggests, a living-donor transplant is when a child gets a kidney from someone who is still alive. One healthy kidney can do the work of two failed kidneys, so, unlike some other organs, a kidney can be donated by a live donor. A living donor is usually a relative or close friend of the transplant recipient. In some cases, however, a kidney can come from a stranger who just wanted to help someone else.

A non-living-donor transplant happens when someone who was an organ donor has died and his or her kidneys are used for transplantation. This kind of transplant requires children in need of a new kidney to put their name on a waiting list until a suitable donor kidney is located.

Preparing for a Kidney Transplant

If the doctor thinks your child should have a kidney transplant, you will first go to a transplant hospital to find out if he or she is a good candidate for the procedure. The health care team there will do an extensive medical evaluation to see if your child is healthy enough to have surgery and tolerate the medicines that will have to be taken for life.

If a transplant is a good choice for your child, a donor kidney will be needed. In some cases, donor kidneys come from a close relative or friend who has the same blood and tissue types and whose organs are similar in size to the child’s. If a living donor can’t be found, your child’s name will be added to a waiting list until a suitable kidney from a non-living donor is found.

Organ Waiting List

A group called the United Network for Organ Sharing (UNOS) oversees the organ list and determines who gets the organs that are donated. They do this based on a score that represents how sick someone is and how quickly the person needs a new kidney.

Organs are also assigned based on who is the best match for the organ donated (for instance, the organ is the right size for the person’s body and the donor has the same blood type as the recipient).

As you wait for a kidney, help your child stay as healthy as possible. This will help improve your child’s quality of life and ensure that he or she is ready for transplant surgery when the time comes. Make sure your child eats a healthy diet, gets regular exercise, and takes all medicines as directed. And get to all medical appointments on time, especially if your child is undergoing dialysis.

Let the doctor and the transplant center know right away if there are any changes in your child’s health, and make sure they know how to reach you at a moment’s notice. When a kidney is located, it will be important to move quickly, so keep your child’s hospital bag packed and ready to go.

Your child may have to wait to find a kidney that is a good match. Unfortunately, no one knows how long that wait will be. It could be just a few days or it could be years.

Waiting is hard, so consider finding a support group of parents whose kids have had transplants or are waiting for transplants. To find a local group, talk to your doctor or the social worker at the hospital or check online.

Transplant Surgery

When a suitable donor kidney is found, your child will go to the transplant hospital for the surgery. There, a blood sample will be taken for something called an antibody cross-match test. This determines whether your child’s immune system will accept the new kidney. If the test comes back negative, the kidney is acceptable and the transplant can begin.

In the operating room, your child will be given general anesthesia to sleep through the procedure. The surgeon will then make a small cut, or incision, in the lower part of your child’s abdomen, just above the hips. The new kidney will be placed in the abdomen, and the surgeon will attach the kidney’s blood vessels to blood vessels in the lower body. The new kidney’s ureter tubes (tubes that carry urine) will be connected to the bladder.

In most cases, children’s failed kidneys are left in place and aren’t removed unless they are causing complications such as high blood pressure or an infection. Kidney transplant surgery usually takes about 3 to 4 hours to complete, and the new kidney often will start working right away, though it could take a few weeks.

Recovery

After kidney transplant surgery, your child will spend a few days or up to a week in the hospital. During this time, the health care team will monitor him or her closely to make sure there are no complications from the surgery, such as bleeding or infection.

A person’s immune system is programmed to sense foreign objects, such as bacteria, and help the body get rid of them. Unfortunately, your child’s immune system will recognize a new kidney as a foreign object and will attempt to reject it. To keep this from happening, your child will need to take medicines called immunosuppressants. Immunosuppressants can make your child vulnerable to infections (especially in the days immediately after surgery), so be sure to keep your child away from sick people and have everyone at home wash their hands often.

For the first few weeks after surgery, your child will need frequent checkups to make sure the recovery is going smoothly. If your child develops a fever or soreness in the area of the transplant, tell a doctor immediately. These could be signs that the body is rejecting the new kidney. If the new kidney is rejected or fails, your child can go back on dialysis or undergo another transplant if he or she is still a good candidate.

With modern advances in surgical techniques and immunosuppressant medications, the overall success rate of kidney transplants is very high. So there’s a great chance your child will be able to get back to doing nearly everything he or she enjoyed before. Just make sure your child eases back into activities and avoids rough contact sports that can damage the transplanted kidney. If you have questions about whether a certain activity or sport is a good idea, ask your doctor before you let your child participate.

Eating well, exercising when the doctor says it’s OK, and getting enough rest will help to keep the new kidney healthy.

Dealing With Feelings

Having a chronic condition is hard enough for a child to deal with. But when you add the stresses and lifestyle changes associated with dialysis, surgery, and immunosuppressant therapy, it can be overwhelming. Talk to your child about these changes and how you will work them into your routine, and find time to do fun things together with family and friends.

For teens, having to take immunosuppressants after surgery can be an added stressor. That’s because these medications can lead to increased acne, weight gain, and hirsutism (excess facial and body hair in women). In fact, this is a major reason that teens are more likely than others to not take their medications. This can be very dangerous and lead to the new kidney being rejected. So it’s vital for parents to communicate the importance of taking all medicines as directed.

Be there for your child to talk about how he or she is feeling. If you think your child needs additional support, make an appointment for him or her to talk to a therapist or counselor. Support groups are another great way to help your child relieve stress while connecting with others who are going through similar challenges.