It is estimated that each year, 1 in 65,000 children in the United States have kidney failure. Children with kidney failure have a different experience with this disease than adults.
Kidney failure can have a negative impact on a child’s growth, bone strength, and nerves. The kidneys are our body’s filters, so when the kidneys do not work in the right way, too much waste can build up that is supposed to be filtered out. This can affect a child’s brain development and function, causing learning disabilities.
Kidney transplant is considered the best treatment option for adults, as well as children, who have kidney failure. Having a kidney transplant means your child would not have to do dialysis, which takes up lots of time and could disrupt your child’s social and school life.
Preparing for transplant
If your child’s kidneys have failed or are getting close to failure, talk to their nephrologist (kidney doctor) about the possibility of kidney transplant.
- You will need to locate a children’s transplant center where the surgery will happen. Most children hospitals in the United States have a transplant center. Click here for help finding a transplant hospital. Similar to adults, it may be valuable to get your child listed at multiple transplant centers.
- Similar to adults, your child will need to have a medical evaluation so doctors can decide if a kidney transplant will be safe for your child.
- Make a list of your questions for the doctors on the transplant team to answer.
The transplant team for a child is similar to one for an adult. However the members of this team should be specially trained doctors to meet the needs of children with kidney disease:
- Pediatric nephrologists are doctors who treat children with kidney disease and kidney failure.
- Pediatric transplant surgeons are the doctors who perform kidney transplant surgeries for children.
- Social workers connect parents of child transplant patients with resources which address the needs of their child and families during and after a kidney transplant. Social workers find resources related to travel to a transplant center, health insurance, and adjusting to school.
- Child psychologists or psychiatrists are trained health providers who help children who receive transplants, their siblings, and parents cope with the emotional changes that often happen during the transplant experience.
- Dietitians create special meal plans that will keep your child healthy before and after the transplant.
- Nurses are responsible for patient care before and after the transplant surgery. They play a major role in the transplant patient’s recovery.
- Your child’s pediatrician will not will not be directly part of the transplant team, but you and the transplant team should keep this doctor informed of your child’s health status.
Types of kidney transplants for children
There are two ways your child can get a donated kidney:
Deceased donor: Your child can get a kidney from a healthy person who just died. To get a deceased donor transplant, the child must be added to the national waiting list. The wait for a kidney could take many months or years. Learn more about deceased donor transplants here.
Living donor: A healthy, living person can donate one of their kidneys to your child. After donating their kidney, the donor can continue to live a normal, healthy life with the one kidney. Almost one half of kidney transplants for children are from living donors.
Donors for children are often their parents, siblings, or other family members. Parents of a child with kidney disease are usually the best donors because they often have the same blood type and are a tissue match. Learn more about living donor transplants here.
Transplant surgery for children
- A child older than 2 years of age can get an adult kidney, as long as the kidney fits in their body.
- The new kidney is usually placed in the child’s lower right side of the stomach area.
- In smaller children, the new kidney is placed in the middle of the child’s stomach area.
- The child’s own kidneys are usually not removed.
- The surgeon will use the donor’s ureter (the tube that the urine passes through) and attach it to the child’s bladder.
- This surgery can take about four hours.
Life after transplant
Recovery in the hospital
- Before your child can go home, the transplant team will continue to provide care in the hospital for about one week, though sometimes a longer hospital stay is needed.
- While in the hospital, your child may have blood tests to check on their new kidney, and given medicines to help with pain.
- The nurse will help your child walk everyday (including the day of the surgery), and coach your child through deep breathing exercises needed for healing.
- Some children may need to go on dialysis briefly after the transplant before their new kidney starts working fully. This doesn’t mean the kidney is a bad one; it just needs a bit more time to start working. This is more likely to happen if your child got a kidney from a deceased donor.
- Before your child leaves the hospital, transplant team members will talk with you, your child, and family members about caring for your child, and the importance of properly taking their medicines to keep their new kidney healthy.
Adjusting at home
- Your child will need to limit physical activities until the surgery area is fully healed.
- Your child should not participate in sports or rough play until the doctor tells you it is safe.
- Keep your child’s surgery spot clean and dry to prevent infection.
- Do not allow you child to be near people who are sick.
- Pets can carry germs, talk to your child’s doctor about when it is safe for them to play with pets.
Medicines to keep the new kidney healthy
There are medicines that your child will need to take every day for as long as they have their new kidney. The medicines are called immunosuppressants, or also known as anti-rejection medicines. Your child’s immune system, which protects the body from germs and harmful cells, may not recognize the cells from the donated kidney right away, then begin to attack the new kidney as if it were any other disease or germ. To help prevent your child’s kidney from being rejected, immunosuppressant medicines must be taken to slow down the immune system so it is less likely to reject the new kidney. To learn more about immunosuppressants, click here.
Warning signs of rejection
It is always possible that your child’s body will try to reject the new kidney. If this begins to happen, it is extremely important to call the doctor right away.
If your child shows any of these signs below, you must call the transplant team right away!
- Fast heartbeat
- Sudden weight gain
- Swelling of the child’s body
- Urinating very little
- Pain or tenderness at the surgery wound
- Symptoms similar to the flu – chills , nausea, headaches, body aches and pain
Your child may be given other medicines to help prevent infections and medicines for upset stomach. It is important that you do not give your child any other medicines, including over the counter medicines, unless you get permission from the transplant team first.
If you have trouble paying for these important medicines, contact your social worker or the transplant team to refer you to agencies that can help.
Now that your child has received a kidney transplant, you and your family will need to make lifestyle changes to make sure your child stays healthy. You will probably notice over time that your child is feeling better, has more energy, is eating better, and is even starting to grow more quickly.
Your child’s transplant team can help with some of the life changes:
- The social worker can help your child adjust to returning to school. They can also help you find resources to help with your financial needs to pay medical bills and buy the required medicines.
- You, your child, and your family may need to adjust emotionally to this big change. Now that your child feels better and has more time to meet up with friends, this new social life and independence may be hard for different members of your family. The transplant team can assist with mental health issues.
- The dietitian can help your child and your family learn about what foods will keep your child’s new kidney healthy.
- Your child will need to see the kidney doctor (nephrologist) for regular blood tests and medical exams to check how well their new kidney is working.
As your child gets older, it is important that you teach them how to manage taking their required medicines and how to be active in their health care.
To help your child adjust to this new lifestyle, there are health education programs for children and teens with kidney disease and kidney transplants. There are also summer camps for children and teens with transplants to build social skills and to learn ways to live a healthy life as someone with a kidney transplant. Ask your transplant team for information about these programs in your area.