Dr Kee Wei Phang, Paediatric Emergency Medicine Grid Trainee, Dr Miriam Fine-Goulden, PICU Consultant

My first experience of organ donation as a paediatric trainee was whilst working in PICU with a patient who sadly died, and I was asked to call the SNODs. SNODs? I had no clue – until a helpful senior PICU fellow explained that they were Specialist Nurses in Organ Donation. SNODs. They form part of the specialist team under the NHS Blood and Transplant service which manages donation, storage and transplantation of blood, organs, tissues, bone marrow and stem cells.

In May 2020, the law concerning adult organ donation in England was changed to an opt-out system. This makes it easier for people to donate their organs and will help more lives to be saved.

However, the op-out excludes specific groups of people, including those under the age of 18, people who lack the mental capacity to make the decision, visitors to, or temporary residents of England. Children and young people under the age of 18 can only donate organs with the permission of those who have parental responsibility. While the rates of adult organ donation and transplant have gone up over the past ten years, paediatric organ donation rates have remained quite static, while there is an increasing demand for donor organs.

Paediatricians play a really important role in promptly identifying when organ donation might be appropriate and helping to facilitate it.

Donation after Cardiac Death vs Donation after Brainstem Death – what’s the difference?

Organ donation in the UK takes place after confirmation of death, which can be diagnosed by either neurological or circulatory criteria.  So, donation may happen after brainstem death testing (donation after brainstem death – DBD) or following circulatory arrest (Donation after Cardiac Death – DCD).  

Donation after Brainstem Death

Donation after brainstem death testing refers to patients whose death has been confirmed using neurological criteria as set out by the Academy of Medical Royal Colleges.

This diagnosis is only possible in patients who are on mechanical ventilation.

Tests for brainstem function begin by the identification of coma, having excluded any potentially reversible effects of drugs or other physiological disturbances (eg. metabolic/endocrine). The cranial nerves are examined systematically, to confirm that there is no brainstem function. Then, there is an apnoea test which tests whether the respiratory centres in the medulla respond to hypercarbia. Additional tests are not currently required in the UK to confirm the diagnosis of death according to neurological criteria, unless there are special circumstances.

In 2015, the RCPCH published recommendations regarding the diagnosis of death by neurological criteria in infants (from 37 weeks’ corrected gestational age to two months post term) which need a stronger hypercarbic stimulus to confirm there is no respiratory response. This allows younger babies to be potential organ donors, to help provide much needed organs for babies and children on the transplant waiting list.

Once death is suspected, a referral should be made to the SNOD who can help advise the clinical team on how best to support the family through the process of considering the opportunity to donate organs. The SNOD will help confirm whether a child is a candidate for organ donation – making sure there are no contraindications, and that there are transplant centres which would accept the organs for transplantation. 

After brainstem testing has confirmed death by neurological criteria – and if organ donation is possible – the SNOD will approach the family to discuss their options and answer any questions about the decision-making and the process.  In some cases of severe brain injury, physiological derangements (such as diabetes insipidus) may develop following diagnosis of death and prior to organ donation. NHSBT provides a paediatric donor care bundle which helps clinicians optimise the donor’s physiology to ensure donor organs are in the best possible condition.

Donation after Cardiac Death

Donation after circulatory death (DCD) applies to patients whose death is confirmed using cardio-respiratory criteria. To minimise the damage to donor organs from ischaemic injury following cardiac arrest, the DCD process is planned carefully once death is determined as inevitable and the family has consented to organ donation. 

Following withdrawal of life-sustaining treatment, the Academy of Medical Royal Colleges code of practice states “the individual should be observed by the person responsible for confirming death for a minimum of five minutes to establish that irreversible cardiorespiratory arrest has occurred”. Five minutes after asystole is confirmed, death is declared, and organ retrieval surgery can begin. With advances in technology, even hearts can now be donated following cardiac arrest. All PICUs and EDs should have clear local policies based on nationally agreed guidance.

Important principles of Paediatric Organ Donation

Approaching & supporting the family

Organ donation should be offered to all families as part of end-of-life decision making and discussions, but discussions with families should not begin until the death is accepted or unless the family raises the subject of organ donation. The eligibility of the donor also has to be determined before any discussions, so that no family is approached unnecessarily. Family support and managing expectations are crucial to successful organ transplantation. There should be a multidisciplinary team approach to organ donation, using the full expertise of the SNODs.

Contraindications

There are very few absolute contraindications to organ donation. Donors with underlying conditions may be accepted, and some coroners will approve organ donation even if a post-mortem examination is needed (depending on the circumstances). The SNOD will always be able to help approach the right people to discuss each individual case.

Key learning points:

1. In the UK, organ donation can occur following confirmation of death by either neurological or circulatory criteria.
2. Refer to SNODs early if organ donation is being considered – they are on call 24/7 and are easily contactable in every trust and region, and can help advise on next steps.
3. Organ donation should be considered in every case of end-of-life care in babies and children, and all families (regardless of background) should be offered the opportunity to consider it if it is an option.

Useful links:

1. NHS Blood and Transplant Organ Donation and Transplantation NHSBT clinical-facing website (there is also a public-facing one) – contains all the info & policies for both adult and child organ donation and transplantation.
2. NHSBT Paediatric Care – This section of the website has links to all of the most up-to-date forms for brainstem testing & donor optimisation

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Dr Kee Wei Phang, Paediatric Emergency Medicine Grid Trainee, Dr Miriam Fine-Goulden, PICU Consultant