Some children will already be having dialysis, while others may not have had dialysis and a transplant may be planned before dialysis becomes necessary.
When a child has a kidney transplant, he or she needs to be prepared both physically and psychologically for both the operation and the ongoing after care. This also involves a great deal of new information for the child or adolescent, parents and family. We have a large team who will help and support you with this, both before and after the transplant. This information is written in general terms; if you have any questions about your child’s specific circumstances, please ask us. It may be useful to write down questions and bring them to your clinic appointment.
What is a kidney transplant?
A kidney transplant is the removal of a kidney from one person (donor), which is then placed into the body of another person (recipient). The new kidney can then do the work of the failed kidney(s) so that the patient feels better without dialysis.
Who is suitable for a kidney transplant?
Most children with kidney failure are suitable for a kidney transplant but we need to assess them carefully so that we can make an appropriate plan of care for each child, ensuring that a kidney transplant would provide the best quality of life.
Before we can put your child forward for transplantation, it is essential that we have your permission to do a series of investigations. These will all be explained to you beforehand and there will be plenty of opportunities for you and your child to ask questions at every stage. We will not perform any investigations without your permission, but we cannot prepare your child for a transplant without as complete a picture as possible of your child’s health. Investigations include:
- blood tests, including blood group, tissue type and certain viruses, such as HIV, hepatitis and measles
- scans, including ultrasound of the abdomen and blood vessels within it and of the bladder
- Bladder function tests
- Ensuring immunisations are up-to-date. Some extra immunisations are given pretransplant
- MRI scans may be needed
It is important that we know which viruses your child has been exposed to before the transplant. Some investigations may mean that your child needs to be admitted to the ward for a few days.
Who can be a donor?
In the UK, kidneys donated to children come from two types of donor:
A living donor: This is usually from someone who has an emotional relationship with the person receiving the kidney and is often an adult relative. However, certain other methods of donation are legally possible, such as paired donation, where one parent cannot give a kidney to his or her own child but could to another child, whose parent could then donate a kidney to the first child. Please ask the team for more information.
A non-living donor: This is from someone who has died, usually in an accident or from a brain haemorrhage, who has been on a life support machine and has registered their organs for donation after death.
Many parents or relatives now decide that they would like to donate a kidney to a family member. The benefits of this are, firstly, that the timing can be planned to fit in with family circumstances, sometimes being carried out before dialysis is needed, and secondly, improved long-term results.
Our own unit data suggests that half of living related kidneys last over 13 years compared to almost 11 years from a non-living donor, although we have several patients whose new kidneys have lasted over 20 years and are now young adults with functioning transplanted kidneys. Due to the fact that transplanted kidneys do not last forever we do not carry out transplants until medically necessary.
Before any surgery can take place, the potential donor must undergo extensive investigations to ensure that the kidney is suitable for the recipient and that the donor’s health would not be compromised by the donation. We check the potential donor’s blood group and if it is not compatible with the child’s then at present the donation cannot go ahead. Unfortunately, this happens in over four in ten parents but we are looking at ways of carrying out some of these incompatible transplants in the future.
If the donor’s blood group is compatible with the child’s, we then go on to look at tissue typing. This is similar to paternity testing. A child will share at least 50 per cent of their biological parents' genetic make up (DNA).
Everyone has a tissue type that does not change. This is based on the antigens (types of protein) present on the surface of most cells. Tissue typing involves blood being taken from the potential donor and being ‘matched’ to blood from the child. If the genetic match of the person donating the kidney is similar to that of the child, this is called a ‘good match’.
Once these two initial tests have been done, the donor is placed on the ‘work up programme’. This means that further discussion and investigations will take place but does not mean that the donor is committed to donating the kidney. Currently there are two adult centres, the Royal Free Hospital and Guy’s Hospital, who work in conjunction with Great Ormond Street Hospital (GOSH). The donor will usually be referred to the centre nearest to their home.
All donors should be aware that the results of the investigations carried out during the ‘work up programme’ could mean that he or she is medically unsuitable and so unable to donate. We would like to assure you that whether you or a member of your family is able to donate or not makes no difference whatsoever to the care your child will receive. The donor’s work up is the priority and responsibility of the adult centres who have a dedicated team of nurses and doctors for this process. We are happy to discuss issues with the donor, but our priority is preparing children for transplant. The work up programme takes around three to six months but can be longer.
Having only one kidney does not prevent donors leading a full and active life. Initially, donors need to be looked after for a few weeks after the operation and will need some time away from work. The length of time off work varies depending on the type of operation, any complications occurring, the job and personal circumstances of the donor. Donors always have medical follow up at the adult centre for a while after the operation. Please refer to the donor information.
It is important to remember that if, at any time, the donor decides not to donate the kidney then they are not required to donate. We respect the donor’s wishes and understand that it may not be a suitable option for many reasons. Donating a kidney is a big decision and it must be the donor’s decision alone and not one made under pressure from other family members or health professionals. The donor’s wishes and information remain confidential. The donor’s reasons for not donating do not have to be shared with other family members or your child's medical team.
If you or anyone else would like more information about becoming a living donor, please let one of the team know.
It is not always possible for a child to have a kidney from a living donor, in which case a kidney from a non-living donor will be considered. Kidneys from non-living donors can only be donated once a person is ‘clinically dead’, which means that they would not survive if their life support machine was switched off.
Unfortunately, there are not enough kidneys donated to give one to everyone who needs a transplant. Therefore, there is a waiting list of people who need a kidney, covering the whole of the UK, run by United Kingdom Transplant (UKT). UKT will contact us at GOSH when a suitable kidney becomes available and we will then contact the child’s family. The list does not work like a queue. There is no ‘top of the list’ or ‘bottom of the list’. When a kidney becomes available, it is offered to the closest match regardless of how long he or she has been on the list. However, children do receive kidneys preferentially compared to adults.
Sometimes people have to come off the list for a short or longer period of time. This can be for any number of reasons: illness, infection or particular family circumstances. You will always be informed if this becomes necessary and, wherever possible, be involved in the decision.
If your child is on the on-call list for a deceased donor kidney transplant, then you may receive a call that a kidney has become available for your child at any time. Please make sure all your contact details are up to date and that a member of your family can be contacted at all times. When you are on call, it is still possible to go on holiday but you must discuss this with the team to make sure the right arrangements are in place. If going abroad where not easily possible to return, it may be decided that it is best to temporarily suspend the child or young person from the 'on-call' list. When you are contacted, you will need to travel to GOSH immediately, so you should have a travel plan arranged, remembering that you could be called at any time of day or night.
When your child gets called in, he or she will need to see the doctors and nurses to gather information on what has been happening recently and an examination to ensure that your child is well and without current infection. Your child will also have one final blood test (cross match) to decide whether the available kidney is going to be a good match. Sometimes, the results of this test mean that the transplant cannot go ahead and your child will stay on the waiting list.
Preparing for a transplant
While working up for a transplant, you and your child will meet a team of doctors and nurses who specialise in kidney disease. This includes a consultant nephrologist (specialist kidney doctor) and one of our consultant transplant surgeons. Your child will be seen during the preparation stage and before, during and after his or her stay in hospital. The team will explain what is involved throughout the process and answer any questions you have as and when they arise.
Experience has shown that all stages of chronic illness and treatment have a significant emotional impact on patients and their families. Consequently, members of our psychosocial team routinely meet with families as part of their preparation for transplant. This is an opportunity to review what has happened since your child was diagnosed and to discuss your thoughts about future treatment.
Our psychosocial team is made up of: a counsellor, a family therapist, a psychologist and a social worker and they work closely with the ward play specialist. We also have access to hospital family support workers who are able to advise on practical and finacial matters in relation to your family circumstances. The psychosocial team can offer help with a wide range of issues affecting your child and other family members.
A play specialist will help you and your child prepare for the transplant. Toys, games and age-appropriate explanations and pictures will help your child become familiar with the idea of transplant and understand what is likely to happen. This also gives your child the opportunity to ask questions when he or she feels ready and able to do so.
Whether your child is having a living or non-living donor kidney transplant, they have to be fit for theatre on the day of the transplant. We cannot operate on children with infections, including coughs and colds. We appreciate that not operating would be very distressing, but this is in the best interests of the child as strong medicines to ‘damp down’ the immune system are used for kidney transplantation. These medicines mean that your child will be less able to fight off infection.
The operation lasts between four and six hours and will be carried out while your child is under a general anaesthetic. The surgeon will make an incision (cut) on your child’s abdomen either on the right or left side. In very small children, the incision is usually in the middle of the abdomen. The surgeon will not usually remove your child’s own kidneys unless they are causing problems. This will have been discussed with you previously. The new kidney will be placed above the pelvic brim, which is the part of the bone that sticks out a little in the front above hip level.
At the same time as the kidney transplant, your child will have a central venous access catheter (a large intravenous line), urethral catheter (bladder catheter) and wound drain inserted. These will be removed in the days and weeks following the operation when they are no longer needed. He or she will also have a stent put into the ureter of the new kidney to keep the tube open and draining. This will be removed in another operation under general anaesthetic six weeks later. If your child has a dialysis catheter, this may be removed during either of these operations.
Every operation carries a small risk of complications such as infection or bleeding. You will be fully informed of all the risks, benefits and possible complications before the transplant operation takes place. There is more information in our in depth guide to kidney transplantation, which we will give you during the pre-transplant outpatient appointment.
What happens after the transplant?
Nearer to the time of the transplant, we will give you more detailed information about the post-operative period. Some families find it helpful to meet another child and family who have been through the experience and we can arrange this for you if you like.
After a transplant, some children (usually the younger ones) go to the intensive care unit for a while until they are breathing comfortably on their own. Others return straight to the ward. In either event, your child will have their own nurse with them for most of the time until more awake and comfortable.
Children stay on the ward for about one to two weeks after the transplant, depending on whether there are complications, but each child and circumstance varies. An important part of looking after a child with a transplanted kidney is the daily monitoring after discharge.
The first three months post-transplant are very demanding, starting with daily visits to the hospital for four weeks. Regular intensive follow-up is necessary post-transplant for the first three months, followed by routine follow-up appointments. This involves measuring weight and blood pressure, as well as carrying out blood and urine tests and occasionally having a scan. We do this to ensure that your child remains as well as possible and that the new kidney is working properly.
After a transplant, your child will have medicines to take every day, some of which (immunosuppressants) reduce the possibility of rejecting the new kidney. Although, rejection is almost inevitable at some point because the body naturally rejects foreign tissue (like kidney) that is not our own. Taking immunosuppressants every day is critical to reduce the chances of this rejection. However, it also reduces your child's immunity. This means that children taking anti-rejection medicines are more susceptible to infections.
Frequently asked questions
The following are questions that we are regularly asked by children and families. If the answer to your questions is not covered here, please ask us.
Will my child feel better after the transplant?
Once the kidney starts working, your child will probably feel much better. It will be important, however, that your child follows the advice given before leaving hospital, particularly about fluids, medicines, catheterisations, clinical appointments, blood and urine tests and X-rays.
How long will the kidney last?
It is impossible to predict how long your child’s new kidney will last. However, many of our children have had kidney transplants that have lasted for ten years or even longer. It depends on many factors, including keeping to the fluid and medicine routine. Children may need a few transplants in their lifetime, usually returning to dialysis in between.
Where do we get supplies of medicines?
You will be able to get your child’s medicines from your family doctor (GP) as you did before the transplant. You may need to get some of the immunosuppressive medicines from either your local hospital or GOSH.
Will my child still need a special diet?
A special diet may no longer be necessary and we will be encouraging a healthy, balanced diet. Some children continue to have a poor appetite after their transplant and so need to continue their special feeds, sometimes via a feeding tube for a while. Your dietitian can give practical ideas to help expand your child’s range and quantity of food eaten. As their appetite improves, the feeds will be reduced and then stopped. There is also a feeding team at the hospital that we can refer your child to if it would be of benefit for your family.
Excessive weight gain can be a problem after transplant, partly due to the effect of steroid medicines that can increase appetite, but also possibly due to your child feeling so much better and wanting to eat things that were restricted previously.
Please ask to see your dietitian if you would like any help. Written information is also given in your child’s transplant fact file.
Will my child need to measure fluid intake as before?
After a transplant, it is important to drink plenty of fluids to prevent dehydration. Your child will be given a minimum amount that he or she has to drink each day, which may change over time. Before a kidney transplant, your child may have been on restricted fluids, so it can be hard to drink as much as required for a new kidney. We will try to work out an appropriate fluid intake based on information about the donor and your child’s age and size. In addition, we can help you choose drinks that will make reaching an adequate fluid intake easier.
When will my child be able to go back to school?
Most children are well enough to go back to school after about six weeks although most find it is easier to start gently, perhaps by attending for half days for a while. It is important that your child’s teachers know about the operation. We are very willing to speak to your child’s school nurse, class or head teacher if you would like us to do so. We often ask schools to help children with their drinks so that they do not become dehydrated during the school day, as this could put the new kidney at risk.
When can my child start playing games or doing PE?
Your child will be able to take part in most games after about six weeks, except those that involve direct body contact. A direct blow to your child’s abdomen could be dangerous. We can supply kidney guards to children when required although these only offer limited protection.
Will my child be at risk of infection?
The anti-rejection medicines suppress your child’s immune system, which means that he or she is more likely to pick up infections. Most of them will be common infections that we all have at some point, but your child may be affected more severely and the infections can last longer than usual.
A common infection in people after a transplant is the cold sore (herpes) virus, which can be painful but can be helped by the many creams and medicines available. The virus that causes glandular fever can also be a problem, so let the team know if your family doctor (GP) suspects that your child has it. Chicken pox or shingles can be serious for children taking immunosuppressive medicines so we usually ensure that, if they have not had chicken pox before the transplant, we vaccinate them against it pre-transplant.
Can my child have the usual immunisations?
Part of the transplant work up is for your child to complete his or her immunisations. After the transplant, your child will be able to have most of his or her usual immunisations but there are a few exceptions:
- MMR (measles, mumps and rubella)
- BCG (tuberculosis)
- oral polio
- yellow fever
- oral typhoid
It is advisable to check before any immunisations, please telephone the team for advice.
Are we entitled to extra benefits?
If you wish, you can meet the social worker and/or family support worker either during an outpatient visit or during your child’s stay in hospital. He or she is experienced in helping families who have a child with kidney disease and will be able to tell you which benefits you can claim and any other sources of support. Unless your child has other problems, you are probably not eligible for Disability Living Allowance (DLA) after the transplant.
We usually provide hospital transport for the daily or frequent visits to GOSH up to six weeks after a transplant. After that, we will still need to see your child several times a week in order to monitor the new kidney, although we regret we are unlikely to be able to provide transport. Our leaflet has more information about travelling to GOSH (PDF, 468KB) and help available with costs.
Will we be able to go on holiday?
Yes, although we prefer children not to leave the UK for at least six months after a transplant. Wherever you go on holiday, it is always a good idea to take a covering letter with you, outlining your child’s medical history, requirements for drinking fluids and a list of medicines in case he or she becomes unwell and needs medical treatment. Be sure to take enough medicines to cover the period you will be away, plus a few days’ extra and carry them in your hand luggage just in case your suitcase goes astray.
We hope that this booklet has been helpful to you. Once the decision has been made that a kidney transplant is the next step for your child, we will give you more detailed information in our in depth guide to kidney transplantation. If you have any questions or concerns at any time, please ask us.