Child as donor protocol

• 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 conversation 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’ refers to: parents exercising parental authority, or the guardian.

1.1. Age criteria for organ donation

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

Table 1. Organ donation possibilities categorized by age group 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 classified by age category

*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 contraindications (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 revoke 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 from the age of 12. Competent children from the age of 12 have the option to register in the Donor Register.

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

Incompetent

If the child (from the age of 12) was incompetent during (a part of) their life, check whether the registration in the Donor Register is valid. When consulting the Donor Register, ask when and by whom the registration was made.

Go to Model protocol (3.3) regarding incompetence.

3.1. General

It is important as 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 donation. The way in which this choice is offered is crucial. An empathic, well-informed professional can support parents in making the right choice. When a child is a potential donor, the option of donation must always be offered to the parents. The choice must lie where it needs to 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 well as possible.

The donation conversation, conducted by a pediatric intensivist and a pediatric ICU nurse, follows the conversation in which the bad news was delivered. These are always two separate conversations. Sometimes, parents may ask about donation possibilities during the bad news conversation. In that case, provide only general information and let the parents know that specific information about donation options will be discussed in a subsequent conversation.

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

For a child aged 12 or older, the opening of the donation conversation is focused on any outcome from the Donor Register or the advance directive. 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 requested. Do not go into details if not asked. When parents have questions that cannot be answered immediately, indicate that these will be returned to later. Avoid incorrect information at all times.

Give the parents enough time to think. State this explicitly. Do not indicate 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 come back later.” Parents may experience extra pressure if a specific time is mentioned.

It can sometimes help parents if siblings 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 also always a child. It is important at this stage of the conversation to state that recipients of the organs and/or tissues are not always children. This is strived for, but not always possible.

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

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

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

Read more in the Model Protocol (8.1).

If a child has died in a non-natural way, 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 doctor must always contact the municipal forensic physician immediately after the post-mortem examination. They must also do this if they are convinced of a natural death. On the death certificate, the doctor must fill in which municipal forensic physician they have contacted.

The obligation to consult with the municipal coroner applies to the death of all persons under 18 years of age. An exception applies to children born after a gestation period of less than 24 weeks who have 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 transplant-related research.

Read more in the Model protocol (8.2).

Consent is documented according to the Model protocol (4.12) .

4.1 Palliative care

Donor care is patient care. Palliative care is a part of this patient care. It is important as a medical professional to realize that this palliative care is influenced by the donation procedure.

When parents have consented to organ donation, a turbulent period may arise. Often, various examinations are necessary to assess the medical suitability of organs for transplantation. In this phase, parents may feel that the child 'is no longer theirs'. It is important to guide this palliative phase well. This can be done by clustering examinations and offering parents rest, space, and privacy. Discuss any farewell rituals with the parents. A donation procedure should never hinder a proper farewell, and all 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 taken 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. It is very difficult for some parents 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 influence the farewell. It is therefore also important that parents know that when they see their child again, 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 at which treatment is withdrawn. After the circulatory arrest is determined, the so-called 'no-touch' period of 5 minutes follows. During these 5 minutes, it is important to give parents all the rest and privacy they need to say goodbye. After this 5-minute 'no-touch' period, the child's death 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 the confirmation of death. Sometimes parents ask if they can walk along to the operating room. This requires extra support for the parents from a nurse.

In tissue donation, the farewell surrounding the death is no different than if a child is not a donor. However, the child must be cooled within 6 hours to make retrieval possible within 24 hours. This means that 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) regarding medical examinations.

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

• 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 parents.

After brain death has been determined, 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).

The Brain Death Protocol must be followed to determine brain death. The most recent protocol has been in effect since July 1, 2020.

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 largely similar to the treatment of ICU patients. There are a few specific points of attention. Choose the treatments from the guideline that you are most familiar with.

Read more in the Model protocol.

Roles and responsibilities

• The attending pediatric intensivist remains responsible for the child's treatment.
• 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: Registering a donor 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 it has been decided to withdraw life-sustaining treatment for a child and when brain death cannot be determined. A DCD procedure can also start if parents prefer to be present when 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 manner in which treatment is withdrawn
• Waiting time until cardiac and circulatory arrest
• No-touch period
• Transport to the OR
• The timeline

The intensivist is responsible during the switch-off period 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 may occur that signs indicating brain death appear during the period leading up to the withdrawal of treatment.

There are then 2 possibilities:

1. Continue the DCD procedure.
2. Start the brain death protocol in order to subsequently switch to the DBD procedure.

The decision regarding 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.

The withdrawal of treatment almost always takes place in the pediatric ICU. During the 'no-touch' period, parents are permitted 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 regarding this is always made in consultation with the parents. It is important to coordinate this well with the OR staff so that 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 withdrawal 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 surgery. 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 surgery should also be discussed. In principle, the child is brought back to the ward after the surgery and subsequently transferred to the mortuary.

Parents can also choose to take their child home. If the child returns to the pediatric ICU after the donor surgery, there is guidance and support for the parents as with standard care for a deceased child, with attention to the agreements made with the parents earlier for the donation procedure.

In 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.

In a DCD procedure, the time between the pronouncement of death and departure to the operating room is very short. The moment of saying goodbye is very short, and that can be difficult for parents. After the donor surgery, the deceased child returns to the pediatric ICU where the parents can still 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 arranges the registration and logistics surrounding tissue donation.

Agreeing to tissue donation can, just like with organ donation, be experienced as comforting by parents. It is important to guide parents in this in the same way as with an organ donation procedure, even though the concrete implementation is very different.

Tissue donation cannot take place if:

• The child received a transfusion or a massive amount of fluid (500 ml or more) due to blood loss in the 48 hours prior to death (due to hemodilution).
• The mother received a transfusion or a massive 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 unfeasible 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 collected from the donor for serology testing, in the interest of recipient safety.

8.3.1. Child up to 2 months: maternal blood collection

In the case of donation from a child younger than 2 months, blood should only be collected from the mother. No blood is collected from the donor. The reason blood is collected and tested from the mother is that in young children, antibody production is not yet sufficiently developed. Antibodies, antigens, and infectious disease pathogens 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

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

8.3.3. Maternal blood collection procedure

The attending physician arranges for blood to be drawn from the mother. This must be arranged before the donor can be registered (1 serum 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 mortuary. The tissue retrieval team collects blood from the donor. If blood cannot be collected 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 (Organ Donation Coordinator) is involved in the procedure. In the case of a combined organ and tissue donor, the pediatric ICU nurse may be asked to have blood drawn from the mother.

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

The mother is also asked a number of questions. Go through these questions with the mother before registration:

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

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 history of alcoholism, drug use, or other intoxications?
• Has she traveled in the past year (in connection with the risk of travel-related diseases – location and date of stay abroad)?
• Has she lived in a malaria-endemic area in the past three years?
• Has she been in the United Kingdom for more than six months between 1980 and 1996?

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

Read more about registering in the Model Protocol (chapter 6).

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

If the heart is intended for donation, extensive pathological examination is possible on the remnants of the heart. The remnants are examined by a pathologist specializing 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 few hours longer due to the tissue retrieval procedure (8 to 24 hours).

Palliative care for a child who becomes a tissue donor is no different from the usual palliative care for a child who passes away 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 may ultimately not be used for transplantation.
• In the case of heart valve donation, the entire heart is removed (via an incision at the level of the sternum). Explantation takes approximately 2 hours (excluding travel time for the retrieval team). The valves are prepared separately at the heart valve bank.
• In the case of eye tissue donation, the retrieval team removes the entire eye and replaces it with appropriate prostheses. The eyelids are closed, after which nothing of the retrieval is visible.
• After a bone donation, the next of kin 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 taken home. If a combined organ and tissue donation procedure takes place, the child returns to the pediatric ICU after the donor surgery. Support and guidance for the parents and care for the deceased child take place after the donor surgery.

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

The meeting takes place as usual in the pediatric ICU. During this meeting, if parents wish, the donation process can also be discussed. Feedback on the results of the organ transplantation(s) is provided by the ODC (Organ Donation Coordinator).

If 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 meeting.

See also: explanation for next of kin.

• Care for a child in the palliative phase is, as usual, 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 staff member (for siblings).
• If possible, offer: keepsakes, imprints, photos, a lock of hair, or others, according to the parents' needs.
• Make arrangements based on wishes and needs for saying goodbye before and/or after the donation surgery, and, if desired, make arrangements with spiritual care (in the hospital or their own community) or other support disciplines.
• Make arrangements based on wishes and needs for caring for the body before and after the donation surgery. Create opportunities for parents/family to say goodbye, opportunities for parent(s) to lie in bed with the child (as needed and if technically possible), and discuss the performance of any specific rituals.
• Provide an explanation of the procedure timeline:
  • DBD: including duration of donation surgery, moment of saying goodbye, return from OR, care for the body
  • DCD: switch-off, agonal phase, no-touch period, moment of saying goodbye, duration of donation surgery, return from OR, care for the body
• For DCD procedure: pay extra attention to the room where the donation procedure is started (from the switch-off phase until transport to the OR). Check the possibilities in the pediatric ICU or in a room closer to the OR.
• State that the child may look different after the donor surgery, and will be pale and cold.
• Pay extra attention to the transfer to the OR, the route (elevator keys), and how far parents are allowed to accompany the child.
• Discuss what wishes parents have after the donor surgery: caring for the deceased child, saying goodbye, and potentially taking the child home.