Information for parents and patients

Children and adolescents and their families are presented to our department when they have such severe lung disease or lung and heart disease that lung transplantation (rarely: combined lung and heart transplantation) is being considered as a treatment option. This often places a significant burden on those affected, with a new treatment center with as yet unfamiliar staff, new requirements and extensive examinations and concerns about major surgery.

We advise to contact us early in the case of progressive lung disease in order to have enough time to get to know each other and to plan accordingly in case a transplant becomes necessary. But of course we also receive inquiries for transplantation from treating hospitals without much time beforehand as well as from families with a child who has suddenly become seriously ill.
The request or presentation to the transplant center is not associated with a commitment to transplantation as a treatment option.

We are usually contacted by your attending physician, as we require extensive documentation in advance. Independently of this, you can also contact us via our contact form.

Objectives and requirements

As a rule, lung transplantation should be considered if the underlying disease continues to progress despite the use of all available therapeutic options, if the ability to cope with everyday life is already significantly reduced, making everyday activities possible only with great effort or not at all, and if the progressive deterioration of lung function raises concerns about survival. Accordingly, the goals of transplantation are

• the improvement of the quality of life and
• longer survival than without transplantation.

Achievement of both objectives is highly likely with a careful selection of patients (who is suitable for transplantation?) and a careful planning of the listing date, but can of course never be guaranteed on an individual basis. The extent of the operation can lead to multiple complications. Therefore transplantation should be considered only when all therapeutic alternatives have been exhausted and the likely benefit of transplantation is greater than the risk. Conversely, transplantation should not be performed if the above goals are unlikely to be achieved. In addition to medical reasons that make transplant success unlikely (such as infections with certain germs that cannot be treated), there may also be reasons in the patient's behavior (for example, if the patient is unable to reliably perform vital therapy after transplantation). In contrast to the treatment of the original disease, where medical prescriptions are recommendations, in the case of transplantation the parties involved enter into a therapy contract. This means that the patient and parents undertake to fully implement the therapy that has been adapted to the medical necessities and prescribed by the transplant team. Even though the amount of therapy required after transplantation is often less than before, the exact implementation of the lifelong treatment is mandatory in order to ensure the success of the transplant. Exact adherence to these prescriptions is not only in one's own interest, but also dictated by responsibility towards the organ donor and his family, as well as towards other patients on the waiting list who did not receive the transplanted organ.

Transplantation evaluation - the presentation in the Pediatric Pneumology Department at the MHH:

Before deciding in favor or against a transplantation, a thorough evaluation of the individual situation is necessary to determine the best possible therapy. The best possible therapy is one in which the child and his or her family can best achieve or come close to the health goals they have set for themselves. Because these goals can vary widely in different patients a therapy as costly and as life-changing as a transplantation can never be decided without considering these individual needs. In addition, it should be noted that the goals of the child or adolescent may differ from those of the parents (or other family members).

Therefore, the goal should not be to make a definitive decision in favor or against transplantation at the first presentation at the MHH Children's Hospital. Rather, together with you and your child, we will try to find the best possible course of action for your personal situation. If it turns out that a transplantation is not the appropriate procedure, we will jointly determine how to proceed. If the parties involved decide in favor of a transplantation, we will plan the optimal listing date as well as the necessary therapy until transplantation.

In preparation for your stay in our clinic, we will first request detailed information from your current outpatient clinic and then offer an inpatient stay with us of approx. 10-14 days. During this stay many examinations you are already familiar with will take place (pulmonary function tests, walking test, ultrasound, X-ray, blood tests etc.). However, the main purpose of the inpatient stay is to get to know each other, to exchange information and - as far as possible - to optimize the therapy carried out so far. For this purpose, you will get to know the staff from all disciplines of the transplant team.

For many patients and their parents, this introduction to our clinic is filled with worries and fears. For many it is the first contact with us and thus with an unfamiliar medical team and a far-reaching decision is pending. In order to reduce the resulting pressure, we do not aim to make a decision in favor or against a transplantation during the initial presentation, but as a rule recommend that after the inpatient stay the new information should be discussed at home with family, friends and, if necessary, also with the current outpatient clinic. In case of a decision in favor of a transplantation, but also in case of further need for information, a new appointment will be made. Rarely a child is so seriously ill (e.g. treatment in the intensive care unit of another hospital) that a transfer to us cannot take place directly and we therefore initially can only invite the parents to us for an educational discussion. However, an examination of the child by a physician from the transplant team is always necessary before a listing for transplantation is possible.

Transplantation represents a profound change in the lives of most patients and their families.The support of our psychosocial team is a central part of our medical care, both in the decision-making phase before transplantation and in the course afterwards. Of course this does not replace the close psychological support or talk therapy close to home, which is often useful.

We will never recommend or suggest a transplantation to you if you do not wish this yourself. Unlike many other therapies, the decision in favor or against a transplantation is very individual - there is no right or wrong decision. In principle, a transplantation is only possible and sensible if all those involved, i.e. the child or adolescent, the parents and the treatment team, clearly decide in favor of it and consider it to be promising. This decision is often difficult and not always unanimous among those involved (especially the child and parents). It is therefore all the more important that everyone involved in the decision-making process is given the opportunity to express their hopes, wishes and concerns and that these are taken into account appropriately.

Before the presentation, please make a note together of all the questions you have as a family on the subject of transplantation.