Children and adults who need transplants are added to the national transplant list, which is also called the waiting list.

Being on the transplant list

Many people wrongly think that the transplant list is like a waiting list for other types of operations – you start at the bottom and slowly work your way to the top. It is better to think of the transplant list as a lottery, which means your child can get a kidney after a very short wait or after a long wait.

The average wait for a deceased donor kidney transplant for a child is around one year. This will vary depending on your child’s matchability score. This is available once your child goes onto the waiting list and your child’s consultant should discuss it with you then.

When a child is put on the transplant list

Your child’s nephrologist (kidney specialist) will decide when your child is ready for a kidney transplant.

  • Often, children may have a kidney transplant before they need dialysis. This is called a pre-emptive transplant.
  • Other children may need to have dialysis first for a number of reasons:
  • If the kidney failure only presents itself just before your child needs dialysis, there will not be time for the medical preparation for a pre-emptive transplant
  • Even for children who have had kidney failure for some time, there are some medical reasons why they need to have dialysis before a transplant.

Read more about why a deceased donor and a living donor can’t share antigens

If someone receives a donor kidney that is mismatched, his or her body will recognise it as foreign tissue and will destroy it.

If your child receives a kidney from a deceased donor that shares antigens with a future living donor (for example, a parent), your child can no longer receive a kidney from that living donor in the future. This is because your child will be sensitised to the antigens from the deceased donor, and therefore reject a kidney with this antigen in the future.

More about matching and HLAs in Kidney transplant – an introduction

More in Kidney transplant – living donors

Being on the transplant list while a living donor is having tests

If you or someone else would like to be a living donor and give one kidney to your child, there will be a series of tests over some time. These will find out if there are any risks to the living donor and if there is a close match to your child. While this is happening, your child may continue to be on the transplant list for a deceased donor.

If early results of the living donor work-up are encouraging, you may wish to review your child continuing to be on the waiting list. If you do decide that your child should remain on the waiting list, your child’s doctor may suggest further restrictions on the waiting list matching at this point, based on the living donor’s tissue type. This will help make sure that the living donor could still donate a kidney to your child in the future if they needed another transplant.

If a decision is made to proceed with living donation, your child will usually be taken off the national list once a date for living donation has been set. You can discuss all of these issues with your child’s doctor in more detail.

When a kidney becomes available

When a kidney becomes available, a central transplant office will contact your local transplant coordinator, someone who manages organ transplantations, to make the offer. This will then be discussed with the transplant surgeon (the surgeon who manages the operation) and the consultant paediatric nephrologist (doctor who treats babies, children and young people with kidney problems) on duty. They will consider all of the known medical information about the donor, and decide whether this is a suitable donor for your child. If you have made special requests about the type of donor, these will be considered.

Most kidney offers are made as soon as the donor’s HLA type is known (see Kidney transplant – an introduction) – this is usually before the kidney has been removed. The transplant coordinator, or another person from your paediatric renal unit (special unit for children with kidney problems), will contact you. This may be after the kidney is removed from the donor and your doctors confirm the match. Or, if you live far away from the unit, this may be as soon as the kidney offer is made.

Crossmatch at the hospital

When your child arrives at the hospital, he or she will have several more blood tests. These include an immunological crossmatch, which tests for any reaction between a sample of your child’s blood and a sample of the donor’s blood. The result can take up to four hours. If there is no reaction – if the result is ‘negative’ – the transplantation can take place.

If this is your child’s first transplant and he or she has no or stable levels of antibodies on regular blood tests, and has not had a blood transfusion in the last 12 months, then it is extremely unlikely that the crossmatch would be positive and prevent the transplant taking place. The actual crossmatch is still done but the operation does not need to wait for the result. This is called a virtual crossmatch. This is sometimes done to reduce the cold ischaemia time – time from removal to transplant – and is particularly important for DCD transplants where a short cold ischaemia time reduces the risk of delayed graft function. Your child’s doctors will look at his or her earlier blood test results for any antibodies that might attack the transplanted kidney.

Donor data collected

Specialist nurses for organ donation collect detailed information about the donor’s medical history from hospital medical records and from relatives. This is in order to ensure that it is as safe as possible for the kidney to be donated. This includes information about

  • their general health, including particular health conditions and treatments
  • behaviour that might affect their health, such as drinking alcohol, taking drugs and sexual history
  • a history of recent travel to other countries, where the donor might have been at higher risk of infectious disease.

Please remember this information cannot be shared with you. It helps your transplant team make a decision about which donors are suitable for your child’s transplant.

Reasons to decline kidneys for recipients who are children

There are some situations in which donors are not or are rarely used for kidney transplants in children. Your transplant team will use this information to decide whether a potential donor kidney is suitable for your child’s transplant.

Read more about when a kidney will not be used because a donor has a condition

Donors with the following life-threatening conditions will not be used for a transplant in a child:

  • HIV disease
  • Cancer that has spread
  • Diseases like Creutzfeld–Jakob disease (CJD – the human form of mad cow disease)
  • Active tuberculosis (TB)
  • Swine flu, unless the donor has been well treated with antiviral drugs first

Reasons why a kidney will not be used

If a donor has a known life-threatening disease that may be transmitted in the donated kidney, their organs, including kidneys, will not be used for a transplant in a child. Examples of these types of conditions are HIV disease and cancer that has spread. These conditions are listed in the more information box.

This leaflet has been co-authored with Martin Christian, Consultant Paediatric Nephrologist, Nottingham Children’s Hospital and Dr Stephen Marks, Chair of NHS Blood and Transplant paediatric kidney advisory subgroup.