A deceased donor is a person who has recently died, has given permission for his or her organs to be used for transplantation, and whose body organs, such as the kidneys, are considered to be in a healthy condition and suitable for transplant. This type of transplant is known as a deceased donor transplant or a cadaveric transplant.

National transplant list

If your child needs a kidney transplant, he or she can be added to the national transplant list, which is also called the waiting list. Your child will then wait for a suitable deceased donor for his or her new kidney. Although children are prioritised on the national transplant list, it can take up to one year and sometimes longer before a suitable donor is found and the kidney transplant takes place.

Matchability score

There is more basic information about matching in the general transplant leaflet and it would be helpful to read this first. When your child goes onto the transplant list he/she will be given a matchability score. This score tells the transplant team how easy or difficult the patient is to match, based on the blood group, tissue type, and any antibodies made against mismatched antigens from previous transplants or blood transfusions. The scores are ranked from 1 (easy to match) to 10 (difficult to match). If your child has a score of:

  • 1, 2, 3 or 4 – he or she is likely to be matched with a donor and have a kidney transplant within a year
  • 5 or 6 – he or she may have a kidney transplant within a year, but it may take longer
  • 7, 8, 9 or 10 – there is a strong possibility he or she will wait longer than a year to have a kidney transplant

Your doctor will be able to discuss your child’s matchability score with you once he or she is accepted on the waiting list. This may help you to consider options for living donation.

When a less well-matched transplant happens

If a child is on the transplant list for more than one year (while they are on dialysis), your transplant team may decide to accept a less well-matched transplant. This increases the chance of your child getting a transplant. Your nephrologist (kidney specialist) will usually make the final decision. If you have any concerns, or if you feel you would rather wait longer for a more acceptable match, you should discuss this with your doctor.

Donors stay anonymous, which means that the family and child receiving the donation do not know who the donor is. Some families wish to express thanks to the relatives of the donor, and this can be done in a letter sent through the transplant coordinator or nurse.

Once a potential donor is identified, your child needs to be ready to go into hospital straight away for tests. If your child is well enough and if the kidney is confirmed to be suitable, the transplant surgery will be done as soon as possible.

When someone becomes a donor

Adults in the UK may register on the NHS Organ Donation Register. A growing number of people are on the Register – they agree to give one or more of their organs, such as their kidneys, in the event of their death.

This gift helps one or more people who need a transplant. If doctors think that a patient on a life support machine is unlikely to recover (get better and survive), they will test his or her vital functions, such as breathing. If these tests show that the patient’s vital functions are completely damaged because of brain damage, they will advise that treatment should be stopped because there is no chance of the person recovering.

The doctors will then speak with the patient’s family to consent to switching off the life support machine. A specialist nurse in organ donation (SNOD) is a specially trained nurse who supports families during a donation. A SNOD may meet with the family to discuss the possibility of using their loved one’s organs to help one or more people who need them. Some patients will have previously registered on the Organ Donation Register, which shows that this is what they would have wanted and makes this process easier.

As soon as the family gives consent for organ donation, healthcare professionals will test the deceased patient as a possible organ donor. If his or her organs are healthy, these are removed and then quickly and safely transported to the transplant centres where they are needed.

Types of deceased donors

There are two types of deceased donors in kidney transplantation:

  • donors after brain death (DBD)
  • donors after circulatory death (DCD).

Donors after brain death (DBD)

A donor after brain death (DBD) is someone who has died of an illness or injury from which the brain cannot recover. The person’s other organs, including the kidneys, are usually in a healthy condition. Once the donor’s family consents, the donor’s organs are removed while the heart is still beating and pumping blood around the body.

There is always a period of time between removing a kidney from a donor and placing it into the recipient. This is called the cold ischaemia time. Transplant surgeons try to keep this as short as possible, but within 18 hours, with DBD transplants.

Donors after circulatory death (DCD)

A donor after circulatory death (DCD) is someone who has died because his or her heart has stopped working. Once the donor’s family consents, the donor’s organs are removed after the heart has stopped beating. Because the donor’s heart is not pumping blood, the kidneys and other organs do not have blood flow for a short period of time after death and before they are removed.

There is always a period of time between removing a kidney from a donor and placing it into the recipient. Transplant surgeons try to keep this time as short as possible with DCD transplants because the kidney will have not have had blood flow for a short period of time before they are removed.

Until recent years, kidney transplants were always from DBDs. The number of people waiting for organ transplants is increasing every year. In recent years, transplant surgeons have started using kidneys from patients who have died because their hearts stopped working. Most DCD kidney transplants have been used for adult recipients, but some have been used in children.

Particular risks for DCDs

The experience so far in DCD kidney transplantation is that the kidneys may take longer – up to several days – to start working. This is called delayed graft function.

Once the DCD transplanted kidneys do start working, they seem to do as well as DBD transplanted kidneys. One year after the operation, there seems to be no difference in how many kidneys are still working between DBD and DCD kidney transplants.

Your options 

For more information about the additional risks, speak with your transplant team. You may decide that you do not want your child to have a DCD transplant, but you should discuss this first as it may increase the amount of time your child waits for a transplant.

Information about a deceased donor

Medical history

Before donors’ organs are removed for transplantation, they have a complete medical history check and are tested for serious infections such as HIV and hepatitis (liver disease).

It is not possible to share all of the donor’s medical information with you, to respect the donor’s privacy.

Which medical problems are not accepted

Deceased donors with a history of medical problems such as cancer, HIV or other infectious diseases will not usually be considered for donation to children. Those with a history of other problems such as diabetes or severe hypertension (high blood pressure) are also less likely to be considered for children unless there are other good reasons for going ahead with the transplant.

Age

Most deceased donors for child recipients are aged between 5-50 years.

Deceased donors are occasionally children. However, kidneys from children aged less than 5 years are usually not accepted. This is because there is a higher risk of the transplanted kidney not working because of thrombosis (when the blood vessels are blocked with a blood clot).

Occasionally, kidneys from smaller children and infants are transplanted as a pair (‘en-bloc’) into the recipient. Your child/s transplant medical team may discuss this with you.

Anonymity and saying thank you

When specialist nurses for organ donation talk to relatives about donating their loved one’s organs, it is on the understanding that the donor stays anonymous (which means that the family and child receiving the donation do not know who the donor is).

Transplant staff understand that recipients or their parents may feel they want to express their thanks to the relatives of the donor and this can be done in an anonymous way after the transplant, by writing a letter. The transplant nurse or coordinator will be able to tell you more about this.