Protocol Child as a donor

• Exploration: can the child be an organ or tissue donor?
• An initial conversation with the parents and consultation of the Donor Register for children aged 12 and older.
• Donation discussion with the parents.
• Organ donation process and palliative care tailored to the child as a donor.
• Explanation of donation procedures: DBD, DCD and tissue donation.
• Aftercare for parents

‘Parents’ means: parents who exercise parental authority, or the guardian.

1.1. Age criteria for organ donation

The age criteria are approximate. After the exploratory conversation with the parents, always first contact the organ center of the NTS for a referral to the on-duty organ donation coordinator (ODC) to explore the possibilities of donation.

Table 1. Organ donation possibilities classified by age category and DBD and DCD donation

See also: Donor recognition organ donation Model protocol

Check possibilities for tissue donation based on age and weight.

Table 2. Possibilities for tissue donation categorized by age group

*For heart valve donation in children up to 2 years, heart valves are only donated at the specific request of the parents.

See also: General contra-indications (Model protocol)

The Organ Donation Act is also legally valid for children (chapter 3, paragraph 1, article 9, article 11 paragraphs 5, 6, 7 and article 12).

• Children can register in the Donor Register from the age of 12.
• When a child up to the age of 16 has registered with consent (Yes, I want to be a donor), parents may override this consent.
• An objection (No, I do not want to be a donor) cannot be overruled by parents.
• It is always necessary to consult the Donor Register for a potential donor aged 12 or over. Competent children aged 12 and over have the option to register in the Donor Register.

Go to Model protocol (3.4) on follow-up steps for children.

Incompetent

If the child (aged 12 or over) was incompetent during (part of) their life, verify whether the registration in the Donor Register is valid. When consulting the Donor Register, inquire when and by whom the registration was made.

Go to Model protocol (3.3) on incompetence.

3.1. General

It is important for a professional to realize that this is not a request for a donation. In other words, it is not about asking for a donation, but about offering a choice; whether or not to consent to a donation. The way this choice is presented is crucial. An empathic, well-informed professional can support parents in making the right choice. When the child is a potential donor, the option of donation must always be offered to the parents. The choice must lie where it should be made, namely with the parents. For parents, consenting to donation can also be experienced as comforting. It is important to guide parents through this as best as possible.

The donation conversation, conducted by a pediatric intensivist and a pediatric ICU nurse, follows the breaking bad news conversation. These are always two separate conversations. Sometimes parents might ask a question about donation options during the breaking bad news conversation. If so, provide only general information and let parents know that specific information about donation options will be discussed in a subsequent conversation.

For a child under the age of 12, a donation conversation starts differently than for a child aged 12 or older. If a child is under 12, an opening question to the parents could be whether they have ever discussed donation together, or if this has been a topic of conversation with the child previously.

For a child aged 12 or older, the opening of the donation conversation focuses on the potential outcome from the Donor Register or the declaration of intent. After this, it can be asked whether and when it was discussed with the child and what the child indicated about it themselves.

It is important to respond to the information needs of the parent(s). Provide information that is needed. Do not go into details if they are not asked for. When parents have questions that cannot be answered immediately, indicate that this will be returned to later. Avoid incorrect information at all times.

Give parents enough time to think. Mention this explicitly. Do not state that you will return after, for example, half an hour, but speak in general terms, such as "take all the time you need to make a good decision, I will be back shortly." Parents can experience extra pressure if a specific time is mentioned.

It can sometimes help parents if a sibling or other family/friends are involved in making a decision. In addition, paramedical disciplines can be offered as support, such as medical social work or spiritual care.

Parents sometimes expect that a potential recipient is always a child. It is important at this stage of the conversation to mention that recipients of the organs and/or tissues are not always children. This is aimed for, but not always possible.

It is also important at this stage to mention what the consequences of an organ donation and/or tissue donation procedure are for saying goodbye and the timeline (see specific procedure DBD, DCD, tissue). Only on the basis of complete information can a good decision be made.

Sometimes it is desirable/necessary to hold multiple conversations at intervals. If there is a need for specific information, an Organ Donation Coordinator (ODC) can already be involved in the conversation at this stage. It is important to provide information about the procedure itself only if parents need it. Always respect the family's decision. Mention this explicitly as well. Once the choice has been made, it may be desirable to enlist the support of, for example, pedagogical care for any brothers/sisters.

When parents have given consent for donation, a new conversation follows. In this phase, the ODC is introduced to the parents. They will go through the donation procedure, duration, and consequences step by step with the parents.

Read more in the Model Protocol (8.1).

If a child has died in an unnatural manner, or if there is doubt about the cause of death, organ and tissue donation can still be a possibility. However, permission from the public prosecutor is required.

For a deceased person under the age of 18, the physician must always contact the municipal coroner directly after the post-mortem examination. They must also do this if they are convinced of a natural death. On the death certificate, the physician must enter which municipal coroner they have contacted.

The obligation to consult the municipal forensic pathologist applies to the death of all persons under the age of 18. An exception applies to children who were born after a gestational period of less than 24 weeks and who died within 24 hours of birth.

Read more in the Model protocol (3.5).

During the conversation with the family, the ODC discusses the question of whether there is consent for transplantation-related research.

Read more in the Model protocol (8.2).

The consent is documented in accordance with the Model protocol (4.12).

4.1 Palliative care

Donor care is patient care. Palliative care is a component of this patient care. It is important for medical professionals to realize that this palliative care is influenced by the donation procedure.

When parents have agreed to organ donation, a turbulent period may ensue. Various examinations are often necessary to assess the medical suitability of organs for transplantation. During this phase, parents may feel that the child 'no longer belongs to them'. It is important to guide this palliative phase properly. This can be done by clustering examinations and offering parents peace, space, and privacy. Discuss any farewell rituals with parents. A donation procedure must never hinder a proper farewell, and all necessary time must be provided for this.

A donation procedure takes time and ranges from 12 to 36 hours. It is therefore necessary to be as clear as possible to the parents about the duration of the procedure.

The manner of saying goodbye depends on the type of donation procedure.

In a DBD procedure, the child is brought to the operating room at a certain point. Parents can walk along to the door of the operating department or say goodbye on the ward. For some parents, it is very difficult to realize that their child is truly dead because the chest is still moving up and down and the body is still warm. This can affect the farewell. Therefore, it is also important that parents know that when they see their child back, it will be cold and pale.

In a DCD procedure, the parents can be present at the circulatory arrest. Sometimes this is a reason to choose DCD. In the DCD procedure, a time is chosen in consultation with the parents when treatment is stopped. Following the determination of circulatory arrest, the so-called 'no-touch' period of 5 minutes ensues. During these 5 minutes, it is important to give parents complete peace and privacy to say goodbye. After this 5-minute 'no-touch' period, the death of the child is confirmed by the physician, and the ODC comes to take the deceased child to the operating room together with the nurse. It is important to prepare parents well that this will happen quickly after confirmation of death. Sometimes parents ask if they can walk along to the operating room. This then requires additional support for the parents from a nurse.

In tissue donation, the farewell surrounding death is no different than when a child is not a donor. However, the child must be cooled within 6 hours to enable retrieval within 24 hours. This means the body is taken to a mortuary where the tissue retrieval will take place.

The donation procedure starts after the conversation with the parents about donation has been completed and consent for donation has been obtained. Depending on the situation and in consultation with the parents, it is determined which organ donation procedure is possible or desirable.

Read more in the Model protocol (chapter 7): Registering a donor and logistics.

Read more about the Model protocol (7.1) on medical examinations.

When a child is suspected of brain death and parents have consented to organ donation, the DBD procedure is initiated. A DBD procedure begins with the determination of brain death. Explain to parents the legal obligations associated with determining brain death. In children younger than 1 year, the Brain Death Protocol must be repeated after an observation period. The duration of the observation period depends on age:

• For children in the first week of life: 48 hours.
• For children thereafter up to the age of 2 months: 24 hours.
• For children aged 2 to 12 months: 12 hours.

It is very important to inform parents well about this observation period. It can help parents to be present during (part of) the tests. In particular, the apnea test shows that the child is no longer breathing independently and confirms the irreversible situation for the parents.

After determining brain death, the ODC starts the organization and coordination of the organ donation procedure

In this procedure, a number of specific points of attention regarding palliative care are important (see chapter “4.1 Palliative care”). In the appendix of this document are points of attention for the pediatric ICU nurses summarized.).

The Brain Death Protocol must be followed to determine brain death. The most recent protocol is valid from July 1, 2026.

The brain death protocol valid from July 1, 2026 is substantively unchanged compared to the previous version.

It takes a number of hours until the moment of organ retrieval (donor surgery). During this period, palliative care for the child is initiated. Providing comfort is an essential part of this.

In addition, for a potential donor it is important to (continue to) ensure good organ function. This means that it may be necessary to perform medical procedures.

Donor management is broadly similar to the management of ICU patients. There are a few specific points of attention. Choose treatments from the guideline with which you are most familiar.

Read more in the Model protocol.

Roles and responsibilities

• The treating pediatric intensivist remains responsible for the treatment of the child.
• The ODC can support and advise the intensivist.
• The ODC registers the donor with Eurotransplant and coordinates the logistics.

Read more in the Model Protocol: Donor registration and logistics.

The child is taken to the operating room at the time previously agreed upon by the ODC with the parents.

5.5 Forms

The ODC arranges the forms that must be sent from the pediatric ICU to the OR.

Read more in the Model protocol.

The DCD procedure starts when the decision has been made to terminate life-support treatment of a child and when brain death cannot be established. A DCD procedure can also start if parents prefer to be present when the circulation stops.

DCD specifically concerns a situation in which the death of the child is expected and the moment of death can be foreseen within certain time limits.

In this procedure, a number of specific points of attention regarding palliative care are important (see chapter 4).

Provide an explanation of:

• The policy and the way in which the treatment is withdrawn
• Waiting time until cardiac and circulatory arrest
• No-touch period
• Transport to the OR
• The timeline

The pediatric intensivist is responsible during the period of switch-off and the agonal phase, and also determines when the 5-minute 'no-touch' period begins.

Read more in the Model protocol (chapter 7): Registering a donor and logistics.

It is possible that during the period leading up to the cessation of treatment, signs appear that indicate brain death.

There are then 2 possibilities:

1. Continue the DCD procedure.
2. Start the brain death protocol and then switch to the DBD procedure.

The decision about this is made in consultation with the pediatric neurologist, the pediatric intensivist, and the parents.

Read more in the Model protocol (6.3): switching to DBD.

Stopping treatment almost always takes place in the pediatric ICU. During the 'no touch' period, parents are allowed to hold their child. After death, the child is quickly transported to the OR, where the retrieval team is ready.

The switch-off can also take place in the OR. The advantage of this is that the warm ischemia time is shorter. The decision about this is always made in consultation with the parents. It is important to coordinate this well with the OR staff so they can prepare for it. This is usually arranged via ODC.

Farewell rituals must therefore also be able to take place in the OR preparation room.

The pediatric intensivist remains responsible for the treatment, the cessation of treatment, and pronounces death.

Read more in the Model Protocol:

• Model Protocol: Switch-off procedure (6.4)
• Model Protocol: Agonal phase (6.5)

Read more in the Model protocol (6.6).

Read more in the Model protocol (6.7).

It is important to agree with parents in advance whether the child will return to the pediatric ICU after the donor operation. The parents can wait on the ward or go home. This is done in consultation with the ODC and the pediatric ICU nurse. The wish to care for the child after the donor operation should also be discussed. In principle, the child is brought back to the ward after the operation and then transferred to the morgue.

Parents can also choose to take their child home. If the child returns to the pediatric ICU after the donor operation, guidance and support are provided to the parents just like in standard care for a deceased child, with attention to the agreements previously made with the parents for the donation procedure.

During a DBD procedure, it can be very confronting for parents that the child now also looks lifeless, unlike when the deceased child went to the operating room warm and ventilated and then returns white, cold, and breathless. Therefore, it is important to inform parents about this in advance. In this phase, it is very important to offer parents extra support. To give them time and peace to say goodbye to their deceased child.

During a DCD procedure, the time between the determination of death and departure to the operating room is very short. The farewell moment is very brief, which can be difficult for parents. After the donor operation, the deceased child returns to the pediatric ICU where the parents can say goodbye in peace. In this final phase, as throughout the entire donation process, support and guidance from the pediatric ICU nurse is essential.

8.1. General

A deceased child can become a tissue donor if the time of death is known and there are no contraindications.

Tissue donation can also take place simultaneously with organ donation. In a combined organ and tissue donation procedure, the ODC (Organ Donation Coordinator) arranges the registration and logistics regarding tissue donation.

Agreeing to tissue donation can be experienced as a source of comfort for parents, just as with organ donation. It is important to guide parents in this in the same way as during an organ donation procedure, even though the practical implementation is very different.

Tissue donation cannot take place if:

• The child has received a transfusion or a huge amount of fluid (500 ml or more) due to blood loss in the 48 hours prior to death (due to hemodilution).
• The mother has received a transfusion or a huge amount of fluid (2 liters or more) due to blood loss in the 48 hours prior to the child's death (due to hemodilution).
• It is logistically not feasible to draw blood from the mother (for example: the mother is no longer in the hospital or has passed away).

In tissue donation, blood is always drawn from the donor for serology tests, in the context of recipient safety.

8.3.1. Child up to 2 months: blood draw from mother

In the case of donation in a child younger than 2 months, blood should only be drawn from the mother. No blood is drawn from the donor. The reason blood is drawn from the mother and tested is that in young children the production of antibodies is not yet sufficiently underway. Antibodies, antigens, and infectious disease agents can be transmitted via the placenta and later via breastfeeding. Furthermore, not all antibodies are present in the child yet (immature immune system).

8.3.2. Child from 2 to 18 months

In children between 2 and 18 months old and in children who have been breastfed in the past 4 months, blood must also be drawn from the mother.

8.3.3. Procedure for drawing maternal blood

The registering physician arranges for blood to be drawn from the mother. This must be arranged before the donor can be registered (1 clot tube and 1 EDTA tube). The mother's name and date of birth must be written on the tubes. The tubes accompany the donor to the morgue. The tissue retrieval team draws blood from the donor. If blood cannot be drawn from the mother, the donation procedure cannot proceed.

Tissue donation can take place in combination with organ donation, but also separately. In the latter case, no ODC is involved in the procedure. In the case of a combined organ and tissue donor, the pediatric ICU nurse may be asked to draw blood from the mother.

If blood can be drawn from the mother, the intake process continues. The physician registers the donor with the organ center by telephone. An organ center employee goes through a number of questions with the physician. For the child, the regular questions during the intake are followed. The most important questions can be read in the tissue questionnaire.

The mother will also be asked a number of questions. Review these questions with the mother prior to registration:

• What is the mother's name and date of birth?
• What is her medical history?
• Known with (hematological) malignancies?
• Use of medication at home?

Additional social questions regarding the mother:

• Is there any reason to suspect that the mother has been at risk for a sexually transmitted infection, such as HIV, hepatitis, etc.?
• Was there any alcoholism, drug use, or other intoxications?
• Has she traveled in the past year (regarding the risk of travel-related diseases – location and dates of stay abroad)?
• Has she lived in a malaria-endemic area in the past three years?
• Has she spent more than six months in the United Kingdom between 1980 and 1996?

• The physician (pediatric intensivist / fellow) registers the donor with the Organ Center by telephone.

Read more about registration in the Model protocol (chapter 6).

The referring physician determines whether the heart is intended for heart valve donation or autopsy. If a decision is made for autopsy, heart valve donation is not possible. Eye tissue donation is, however, possible in the case of an autopsy.

If the heart is intended for donation, extensive PA (pathological anatomical) examination is possible on the remaining parts of the heart. The remaining parts are examined by a pathologist specialized in cardiac abnormalities.

Below you will find specific points of attention regarding tissue retrieval and preparations.

In the case of tissue donation: indicate that the child may need to remain in the hospital mortuary for a number of hours longer due to the tissue retrieval procedure (8 to 24 hours).

Palliative care for the child who becomes a tissue donor is no different from the usual palliative care for a child who dies in a pediatric ICU.

• Tissue retrieval has no consequences for laying out the body. Thanatopraxy is also still possible.
• It is possible that, due to safety or quality reasons, the tissue ultimately cannot be used for transplantation.
• In the case of a heart valve donation, the entire heart is retrieved (via an incision at the level of the sternum). Explantation takes about 2 hours (excluding travel time of the retrieval team). The valves are dissected out at the heart valve bank.
• In the case of eye tissue donation, the retrieval team removes the entire eye and places suitable prostheses back. The eyelids are closed, after which nothing more of the retrieval can be seen.
• After bone donation, the surviving relatives can no longer wash the child themselves.

Read more in the Model protocol (chapter 7): Preparation for tissue retrieval.

Read more about specific tissues in the Model protocol (5.2).

Tissue retrieval takes place in the mortuary or funeral home. Afterwards, the child can be transferred home. If a combined organ and tissue donation procedure takes place, the child returns to the Pediatric ICU after the donor operation. The support and guidance of the parents and the care of the deceased child take place after the donor operation.

All parents of a deceased child are offered a follow-up conversation with the pediatric ICU medical team. This is usually 6 weeks after the death.

As is customary, the conversation takes place in the pediatric ICU. During this conversation, if the parents feel the need, the donation process can also be discussed. Feedback on the results of the organ transplantation(s) is provided by the ODC.

If the parents wish, the ODC will contact them six weeks after the death. If necessary, the involved ODC can also be invited to the follow-up conversation. Various forms of aftercare are available for surviving relatives from the ODC.

See also: explanation for relatives.

• As usual in the palliative phase, care for a child is primarily focused on comfort, while at the same time all vital organs are treated optimally.
• Clearly agree on who will be the point of contact for the parents throughout the entire donation procedure, including during and after the donation surgery.
• Offer support from: medical social worker, spiritual caregiver, pedagogical employee (for brothers and sisters).
• If possible, offer: Make a Memory, molds, photos, a lock of hair, or other items according to the parents' needs.
• Make arrangements based on wishes and needs regarding saying goodbye before and/or after the donation surgery, and, if desired, make arrangements with spiritual care (in the hospital or own community) or other supporting disciplines.
• Make arrangements based on wishes and needs for caring for the body before and after the donation surgery. Create an opportunity for parents/family to say goodbye, an opportunity for parent(s) to lie in bed with the child (as needed and if technically possible), and discuss the execution of any specific rituals.
• Provide an explanation of the procedure's timeline:
  • DBD: including duration of donation surgery, moment of saying goodbye, return from OR, care of the body
  • DCD: switch-off, agonal phase, no-touch period, moment of saying goodbye, duration of donation surgery, return from OR, care of the body
• During a DCD procedure: pay extra attention to the room where the donation procedure is initiated (from the switch-off phase until transport to the OR). Check the options in the pediatric ICU or in a room closer to the OR.
• Mention that the child may look different, pale, and cold after the donor surgery.
• Pay extra attention to the transfer to the OR, the route (elevator keys), and how far parents are allowed to accompany the child.
• Discuss the parents' wishes after the donor surgery: caring for the deceased child, saying goodbye, and possibly taking the child home.