Kidney Transplantation in Children
Why is a Transplant Necessary?
Dialysis is only a temporary measure before a kidney transplant becomes available. Even if dialysis is going well and keeping your child healthy, it is a renal transplant which offers the best quality of life. With a successful transplant there should be less disruption to the family and school life. Diet and fluid restrictions should no longer be necessary.
Occasionally a kidney transplant may be considered before a child needs dialysis. This may be discussed with you by your kidney specialist (nephrologist) and transplant surgeon.
At what age do we consider a transplant?
There is no strict age limit but kidney transplants in very young children are usually more difficult to manage. Most units wait until the child is at least a reasonable size and over 2 years of age.
Where does the Transplant Kidney come from?
A kidney may be donated by a family member. This is known as a living related donor transplant. For children this usually means a mother or father or exceptionally another relative. Before deciding to go ahead many tests are performed over several months to make sure the parent is healthy and a kidney is suitable. If going ahead transplant surgeons require a detailed physical and social assessment as there are many issues to consider.
The alternative is that the child receives a transplant from a person who has died in an intensive care unit and where the relatives have agreed to donate the kidneys. This type of transplant is known as a deceased donor kidney transplant.
Where families opt for a deceased donor transplant or a living donor is not possible then that child’s name is added to the national transplant waiting list.
What assessment is necessary?
Placement on the transplant waiting list follows discussion with the kidney specialist and transplant surgeon. Preparation is very important for all the family and this is usually carried out by the primary nurse and play leader. Visits to the area where your child will be nursed after the operation will be arranged. Play therapy using dolls, videos and photograph albums of other children who have undergone a transplant may be helpful. It is important that your child’s questions and fears are talked about as well as your own.
The social worker will also meet with the family to discuss important issues and other concerns which can be helped by discussion and information.
You will also meet the transplant co-ordinator who is a key person within the transplant unit and he/she will make all the necessary arrangements for placement on the national transplant waiting list.
How are Kidneys Matched for Transplantation?
To be offered a kidney your child has to be of a similar blood group to the donor. They also aim to match the tissue type (or genetic make up) of the donor and your child (the recipient). The level of antibodies in your child’s blood is also important.
What are Antibodies?
We all have antibodies in our blood which can react against certain cells or tissue types. If your child has had previous transfusions or a previous transplant, then the level of antibodies in the blood may be high. A high level of antibodies means that it may take longer to match a suitable kidney.
Living Related Donor Transplant
One of the major advantages of a living related donor transplant (LRD) from a parent to a child is that the operation can be planned for a certain day and time. The long term results for a LRD are also better than deceased donor transplants. The parent will be in a theatre so that once the kidney is removed it can be placed straight into their child. The operation will be postponed if the child or parent are unwell.
If I Don’t have an LRD when will the Transplant Happen?
There is a large waiting list for kidney transplants which is held on a national computer based in Bristol. This does not function on a ‘first come first served’ basis but is a way of allowing a suitable matched kidney to be found. When the match between a donor kidney and your child’s tissue type is suitable then he/she may be offered the kidney at any time. However, sometimes the wait can be quite long.
Deceased donor transplant
You will be contacted by a member of the renal team if a suitable kidney becomes available. This may happen day or night so you will be asked to leave a contact number if you are away from home. Pagers can be provided if necessary but it would help if you have a mobile phone and other telephone numbers to contact you.
The operation can only go ahead if your child is well and not suffering from colds and other infections. You will be asked to go to the hospital as soon as possible as there are tests to be done before it is finally agreed for the operation to proceed.
You can be assured that the donor is always tested for the HIV (AIDS) and other viruses. We always look carefully at the match and it is possible for children to have a kidney from an adult donor.
What does the Transplant Operation Involve?
Routine blood tests and other tests will be done to make sure your child is fit for the operation. The operation may still be cancelled if there is a reaction between your child’s blood and cells from the donor. This is what is meant by the term positive crossmatch. The operation is cancelled if the crossmatch is positive because the kidney will probably be rejected early.
Where is the Kidney Placed?
The transplant surgeon places the kidney low down in the abdomen to one side and usually outside the cavity containing the intestines and appendix. The appendix is not removed. The transplant kidney is placed low down on one side so that it can be joined to the major blood vessels going to the leg and also to avoid problems with the ureter leading to the bladder. The child’s own kidneys which are deep in the back are only removed if they are causing problems.
Before the transplant operation starts and while your child is asleep (anaesthetised) a tube is put into a large vein in the neck to measure the pressure in the veins and allow lots of fluid to be given quickly. Drains are placed near the transplant and a tube (catheter) is also placed into the bladder to accurately measure the urine output. The reasons for all these tubes will have been explained to you and your child before the transplant happens. If your child is very worried about tubes and needles then a clinical psychologist may be asked to help prepare your child. Some children also have a nasogastric tube placed down the nose to help drain fluid off the stomach until the bowels are again working.
What Happens After the Operation?
Your child will be closely monitored for the first few days in a high dependency area. If all goes well he/she will soon be able to drink and eat normally. Any discomfort after the operation will be controlled by an infusion of pain killers.
The drain from around the kidney will usually be removed after two to three days but the catheters into the bladder may stay in place for five to seven days. If there are signs that the kidney is not working then a special scan may have to be arranged. For most people the transplant starts working immediately. Sometimes transplants take some time to work properly and dialysis may be needed in the meantime. this does not mean the transplant has failed as it can sometimes take a few days or even weeks for the transplant to ‘wake up’. This can be a difficult and worrying time and all members of the renal team will keep you closely informed of progress.
How long will my child be in hospital?
This will depend upon how your child recovers from the transplant operation. It may be ten days to several weeks depending upon how long the kidney takes to start working and whether there are any problems with rejection. Parents may be able to stay throughout this time. It is appreciated that you may feel torn between your child in hospital, work and other family at home.
Going Home after the Transplant
Before you are allowed home you will have some further teaching so that you can carry on monitoring your child’s progress at home.
To begin with you may be asked to take your child’s temperature, and measure the blood pressure and weight. You may be asked to record these along with the current drug treatment. Regular visits to the hospital will be necessary during the first few months so that your child’s blood can be tested regularly as one of the most important signs of rejection is a rise in the creatinine level.
What drugs are used after a transplant?
Powerful drugs known as immunosuppressants to prevent rejection are given in big doses at first and then gradually reduced with time.
Such drugs include tacrolimus (Prograf), (Imuran), mycophenylate mofetil (Cellcept) and prednisolone (steroids). Many units use a combination of three immunosuppressant drugs. Occasionally additional drugs are used, such as Basiliximab or Daclizumab which are given by intravenous injection. The steroids used are corticosteroids and not the anabolic steroids abused by some athletes.
You should be aware that immunosuppressive drugs are taken for as long as the transplant kidney functions. It is important that drug dosages are NEVER missed, and are taken as prescribed. If drug doses are missed then rejection and damage to the kidney can occur at any time.
Nifedipine, Atenolol and Enalapril are antihypertensive drugs. They are used because there may be an increase in blood pressure after transplantation.
Aspirin is usually given 6-8 weeks following transplantation to prevent thrombosis (clot) formation.
Co-trimoxazole (Septrin), an antibiotic is used to help prevent infections in transplant patients. Septrin is usually given for the first 6 months after transplantation when patients receive high dose immunosuppressive drugs.
Currently trials are being carried out to discover the BEST combination of drugs to use after transplantation to minimise rejection and reduce side-effects. many units are participating in international studies of transplant drugs in children and you may be asked to join. Full information is given to you.
What is Rejection?
Rejection is the term used for an attack on the kidney by the body’s own defences. Signs may include fever, reduced urine output, tenderness over the kidney, rise in blood pressure and feeling generally unwell. However many times we suspect rejection because of a rise in the blood creatinine lvel. If rejection is suspected then a biopsy of the transplant kidney may be needed. Rejection is usually treatable with increased steroids. Occasionally other long term changes are made to your child’s immunosuppressants.
How is a biopsy performed?
The biopsy will be explained to you and your child. Using sedation (medicine to make your child sleep), a needle is placed into the kidney after an ultrasound scan has been performed. The tissue obtained can be examined under the microscope and can reveal what is going on within the kidney. This may be important information in the choice of treatment.
How long will the transplanted kidney last?
Unfortunately, kidney transplants do not last for ever. However, some adult patients have had their transplants for over twenty years. It is possible to return to dialysis if the kidney fails, to await a further transplant.
Is there a special diet after transplantation?
One of the great benefits of the transplant is that your child is likely to have a better appetite, and diet and fluid restriction should be no longer necessary. Those children who required supplements or overnight feeding beforehand should start to eat and drink again. Weight gain can be a problem after the transplant, especially as appetite is increased by steroids. A ‘no added salt’ diet is still recommended to help control high blood pressure. A healthy eating diet is encouraged for all the family.
You will be given a short list of foods that should be avoided in the first 6 months after a transplant because of a risk of infection.
Physical Changes after Transplantation
Initially weight gain and some fattening of the face is quite common but may not happen because the steroid drugs are usually reduced quickly after the transplant. Steroids can also cause an increase in spots or acne in the older child. Do ask for advice. Thinning of the hair may be a side effect of Tacrolimus, which usually settles.
Removal of Dialysis Catheters after Transplantation
These tubes are usually removed about two to three months after a successful transplant. The procedure can usually be done as a day case admission under general anaesthetic. If your child has a gastrostomy button this can also be removed at the same time.
Emotional Well Being
For the child this may involve coming to terms with changes in the body image as well as changes in what they are able to do. Even though most changes will be for the better they are still changes and the child may be more emotional during the time of adjustment. They may have other reactions such as bad dreams or changes in behaviour. If these persist it may be helpful to ask for sime help from the psychologist or social worker. Young people can talk confidentially to a youth worker.
Adults too have a period of adjustment. Having geared themselves up for transplant and coped with all that entails, they are often exhausted and thus find any additional problems difficult to cope with. They also may be prone to infections. Parents who have been kidney donors may experience low moods after the initial excitement of the transplant.
Brothers and sisters have also been through a traumatic time and need some additional care. They have had to tolerate some time without their parents and have had to deal with worries about their sibling. They may also feel a bit left out as their brother or sister has had increased attention.
In general most problems can be helped by talking so if any of your family experience difficulties do consult the social workers or psychologist. If the kidney has come from a close relative (likely to be a parent) then emotions can run high at times. There could be an extended time of recovery given that two members of the family have had operations. This can put a strain on the parent who is well and looking after everyone else.
At home after the transplant
Taking medicine every day can become really tadious and at times, especially when your child is feeling worried or fed up about something, they may be tempted not to take their medicines. It is unlikely that you will notice any effects immediately although it will have an effect on the kidney. Recognise that your child may have problems which are making them unhappy and get some help. This is better than suffering kidney rejection.
If your child has lost some time off school then we will try to arrange to have work sent to their unit or home. Most children are ready to return to school in about 4 weeks. Return to school may be delayed if your child is on high doses of immunosuppressants and a home tutor can be requested after 6-8 weeks. As there may be some problems with school adjustment, team members will visit the school to explain the treatment and offer a supportive link.
Members of the renal team are always available to give you advice and support after the transplant. If the transplant is successful with time there will be a reduced contact with the unit compared to the days when your child was on dialysis.
Many recipient families wish to send a letter of thanks to the donor family which is always well received. This may be written any time after the transplant operation. The letter usually expresses sympathy, thanks and a brief description of the child pre and post-transplant. First names may be used but the letters should remain anonymous with no surnames or addresses. The transplant co-ordinator will arrange postage and she/he or other team members are always willing to help you write such a letter.
Are my Child’s Activities Restricted after a Transplant?
As much physical exercise as possible is encouraged. However, caution should be taken with a few sports such as rugby or martial arts as the kidney may be vulnerable to direct kicks or blows.
Your child can go swimming after the dialysis catheter and/or feeding tube is removed.
Every year there is a national event called the Transplant Games where children and adults who have had organ transplants compete. Your child is welcome to participate. Please visit www.transplantsport.org.uk for more details.
1. Can we travel or go on holiday when we are on the transplant list?
Yes. However, holidays abroad are not recommended. If you are more than 4 hours travelling away from the unit your child will need to be temporarily suspended from the national list.
2. After the transplant, how far can we go away on holiday?
If the transplant goes well, then after about three months a holiday anywhere in the UK could be planned. However, it will depend upon how frequent your child needs to be checked and whether local arrangements can be made for blood tests or check ups if these are necessary. Holidays abroad are also possible but should be deferred until it is certain everything is going well with the transplant.
3. Should seat belts be worn in the car?
Although the lap portion of the seat belt may press slightly over the transplant area this does not harm the kidneys. The wearing of seat belts is compulsory and always recommended.
4. Vaccinations and immunisations
When your child is taking immunosuppressant drugs then all live vaccines such as BCG (for tuberculosis) and live polio should be avoided. Vaccines made from dead bacteria may be acceptable, but always check with your nephrologist.
5. Which infections are a worry post-transplant?
Any infection after a transplant can be a problem as the immonusuppressive medicines needed to keep the kidney healthy also reduces the ability to fight infection. Chicken pox is the major concern if your child does not have antibodies. If your child has a close contact (such as a classmate sitting close by) with chickenpox, then you should inform your renal unit as soon as possible in case your child needs a vaccination called ZIG. If your child develops a rash from chickenpox then get in touch straight away so that treatment can be started early.
Another virus that can cause illness following transplant is called cytomegalovirus (CMV for short). This is a virus which causes a mild flu-like illness usually, but can be more a serious infection for people on immunosuppressant drugs. Both your child and the kidney are tested for CMV before transplant. If your child has never had CMV (i.e. CMV negative) and receives a CMV positive kidney, there is a possibility that he/she will develop CMV. If your child is CMV positive, this is less likely to occur but may still do so. Another virus that can cause concern is EBV which is the virus that can cause glandular fever. In rare cases the virus can cause a condition called PTLD (Post Transplant Lymphoproliferative Disorder) where the immunosuppressants need to be reduced and other treatment required.
6. What about drugs prescribed elsewhere after a transplant?
There are some antibiotics and other medications which can interact with transplant drugs. If drugs are prescribed by other doctors then please check with the renal unit.
7. What if my child has sickness and diarrhoea?
These can interfere with the absorption of drugs into the body. If your child is improving during the day then the drugs can be given at a later time. If your child cannot keep any drugs down all day then please contact the unit for advice. If your child vomits back his/her tablets within an hour of taking them then the drugs should be given again.
8. Benefit changes?
Social Security benefits to which you are entitled will change post-transplant? It is best to seek advice from the social worker as the circumstances for each family and child is different.
9. What do we tell the children about where the transplant kidney came from?
This sensitive question will need a sensible answer and is best discussed with the team members.
10. Can my child have children in the future after a kidney transplant?
If the transplant is working well and your child enters adulthood with good health and good kidney function then it is possible for them to have children of their own. Contraceptive advice should be sought at the appropriate time. Use of the ‘pill’ must always be discussed with the nephrologist.
11. If my child has appendicitis post-transplant is there risk to the transplant kidney?
12. Are there precautions regarding skin care?
As the immunosuppressive drugs increase sensitivity of the skin to the sun’s harmful effects, avoidance of over-exposure to the sun and the use of sun block creams and hats is strongly advised. There is an increased risk of skin cancer in post-transplant patients and all suspicious moles or warts should be reported to the doctor.
13. Does my child require antibiotic cover for teeth extraction?
No, unless there is another reason for giving antibiotics such as a heart valve problems.
14. Will my child need to attend clinic forever?
Even when the transplant has been in place for several years, clinic visits are still needed 3-4 monthly to monitor blood pressure and kidney function.
15. When will my child be transferred to the adult transplant unit?
Young people are usually transferred when it is right for them and they have finished their growing or schooling. So it may be any time between 16 and 20 years! the transfer will be discussed well in advance. A transition pack will be provided from the age of 14 years onwards to prepare him/her for the transfer to an adult unit that is usually closer to home.
Content compiled by members of the Children’s Renal & Urology Unit, QMC Campus, Nottingham University Hospitals.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.