Waiting for a transplant

 

While waiting for the transplant, your child will be placed on a “waiting list”. This time is important for you and your child and it is absolutely necessary that each of the following points is followed up or observed strictly.

 

HEALTH

During this waiting time, it is essential that your child stays in the best possible form, maintains a good nutritional condition and does not develop any infections.

All these points will be discussed with you during the week of evaluation.

The transplant team will draw up a plan intended to meet your child’s health needs best. It is very important and it is your responsibility to make sure that the medical treatment plan of your child is observed. This plan includes instructions regarding drugs, diet, vaccinations and consultations. If, for whatever reason, you are not able to comply with these instructions, you must immediately inform the Centre.

The waiting period may last from some hours to several months. During this time, we will stay in contact with you and will regularly see your child.

As soon as your child is on the waiting list, you, the parents, will be the most important members of the transplant team. We depend on you to ensure the best possible healthcare for your child. It is important and it is your responsibility to keep us informed of any change in your child’s state of health.

 

VACCINATIONS

Sometimes, the vaccination schedule must be accelerated compared with the traditional plan. In fact, after the liver transplant, it is no longer possible to administer certain vaccines due to the drugs that must be taken against rejection (see explications below). Due to the taking of drugs as well, your child will also become a bit more prone to children’s illnesses. We know now that vaccination before the transplant is essential to minimise the risk of certain infections after the transplant. You and your child’s physician will receive all information regarding the changes in the vaccination schedule during the week of evaluation.

 

TEETH

The condition of your child’s teeth must be perfect; therefore, it is advisable to have them examined by a dentist.

 

NUTRITION

A good nutrition is essential for your child’s growth and for the maintenance of his good heath. It is important that your child keeps to a diet while waiting for the surgical intervention. A dietician will draw up a dietary plan during the week of evaluation in order to meet the special needs of every child. For example, when your child needs more calories or a special supply of vitamins and minerals, it is possible that he must take a special preparation such as a hypercaloric drink or a drink containing vitamins. It is very important to stick strictly to your child’s dietary plan. When you have problems with his diet or with his preparations or vitamins, please inform our dietician and our internal specialist. It happens from time to time that the dietary plan must be modified in order to adapt to your child’s changing needs. Since our Centre is responsible for your child’s nutrition, please contact us before making any changes to his dietary plan.

 

REASONS TO CONTACT YOUR PAEDIATRICIAN AND THE CENTRE

While waiting for the transplant, your child may develop severe health problems or his general condition may worsen. You must inform your attending physician and our Centre of changes regarding your child’s behaviour, appetite and stools or when you have the impression that your child is falling ill. Below, you will find a list of the most common and the most urgent reasons requiring you to contact your paediatrician and/or our Centre:

  • Temperature of 38 degrees or above
  • Vomiting of large quantities or for a long period of time
  • Vomiting of blood
  • Bloody or black stools
  • Absence of appetite
  • Abdominal distension
  • Difficulty in breathing
  • Worsening of the icterus
  • When your child is directly exposed to varicella
  • When your child is hospitalised
  • Before administering a new drug or before making any change to the diet

NOTE: Contact us after having seen your paediatrician or after having talked to him – or the paediatrician shall call us.

 

FOLLOW-UP

The transplant team will determine the intervals at which your child must come to our Centre. These visits are important since they enable the physicians to evaluate your child’s state of health. It is important that you take a recent copy of your child’s certificate of vaccination, a list of the drugs and their dosage as well as of his dietary plan with you to every visit. This is to inform the team exactly which drugs your child is taking and if his vaccinations are up to date. The team must examine the treatments prescribed by us and your child’s other attending physicians at every consultation in order to evaluate whether the healthcare plan prepares your child well for the transplant. After every consultation, we will discuss the follow-up to be planned for your child with the paediatrician or the attending physician.

 

MOBILE PHONE

You may get a call from the transplant team at any time – both in the daytime and at night-time! You must thus always have a mobile phone whose number is available to us with you so that we can contact you at any time. You must inform the transplant secretary of any change in your contact numbers! Since you must be able to call us at any time, you should always have the number of our Centre with you. While your child is on the waiting list, you should not leave Switzerland, except for short moments near the barrier, so that you can return to Switzerland as fast as possible if necessary.

 

REGA

Join REGA so that you can be taken by helicopter on the day of the transplant or earlier if an emergency transport is necessary. You should not go with your child by your own car if you come from afar. However, only one parent can accompany the child in the helicopter.

 

EMOTIONAL ASPECT

The fact that your child must undergo a liver transplant and that you must wait for a transplantable organ to be available is stressful for you, for your child and for your family. A transplant always arouses questions and worries. We think that we should talk honestly about the transplant and all the concerns that you and your family might have. Our team psychiatrist can help you to prepare your child and his possible brothers and sisters. We thus suggest you psychological support through our psychiatrist, but also, if you wish so, spiritual support through our chaplain in order to answer the questions and respond to the worries that you and your family might have. We can also bring you into touch with the family members of children who are also waiting for a transplant or who have already received a transplant. Sometimes, it is comforting and more concrete to talk with people who are or were in the same situation. The choice is yours! In fact, some families prefer to share their experience with other families in the same situation, whereas others wish to go through this moment with their family only.