The death of a child is the most devastating experience a parent can face, it defies the natural order of life and can be extremely difficult to make sense of.

Immediate practical considerations

The following is a list of important considerations following the death of a child, although not completely comprehensive it forms the basis of best practice.

  • Allow the parents time with their child, if this is appropriate.
  • Parents should be allowed as much time to say goodbye to their son or daughter as they need.
  • They should be encouraged to hold the infant or child, with support from staff, if appropriate.
  • It should be explained who they should contact to arrange to see their child again at the mortuary, if they wish to do this.
  • Allow the family the option to contact their religious, faith or spiritual leader.
  • It is best practice to allocate a member of nursing staff solely to the family.
  • The most senior member of medical staff should clearly and simply update the family.
  • Offer the parents the opportunity to make memories – hand prints, a lock of hair, photographs.
  • Ensure parents are given their child’s belongings. In fiscal cases this may not be possible.
  • Ensure that members of the wider professional team are informed of the child’s death. This includes:
    • General Practitioner and Health Visitor
    • Lead consultants for the child’s care (Community and Hospital)
    • Medical Records
    • Mortuary
    • Where involved, the Child Protection Unit
  • Record discussion with parents regarding parental authorised post mortem examination
  • Ensure the medical certificate of cause of death (MCCD) is completed if appropriate.

 

Sudden Unexpected Death in Infancy (SUDI)

SUDI is the term used when an infant (0-24 months) dies unexpectedly and suddenly. The cause of death is unknown from the outset.

In some cases a cause of death may be found during post mortem examination, but for many the post mortem examination will not explain the death. The term SUDI may therefore be given as a classification of death on the MCCD, as the death is still unexplained.

 

Points to note regarding SUDI 

  • Resuscitation should proceed as appropriate – as per UK Resuscitation Council guidelines.
  • Always give parents the opportunity to be present during resuscitation and explain what is happening. The family should be informed of their child’s death immediately.
  • Police should be informed if not already present.
  • Detailed history or examination should be undertaken by the most senior medic and the SUDI History and Examination form completed.
  • The family should be informed of the necessity for post mortem examination and the role of the police.
  • Post mortem examination should be sensitively explained to the family.
  • Retain the nappy and clothing for the police – bags can be found in the SUDI pack.
  • Where possible, allow the family to hold the infant and take photographs if they wish.
  • Be sensitive to cultural practices.
  • Signpost to available support services.
  • Contact the health board SUDI Paediatrician. This can be done the next day if out of hours.
  • Inform the Procurator Fiscal office.
  • Contact the GP.
  • Debrief staff and ensure support services are signposted.

 

SUDI Review

The SUDI Review is a multidisciplinary case discussion. The meeting is held shortly after the final post mortem examination report is available, which may be several months after the infant has died. The purpose is to discuss all aspects of the death, including possible causes or contributing factors to see what lessons can be learned and to plan support for the family, particularly in identifying support needs for any future pregnancies.

Paediatric Organ Donation

Click here to view more detailed information on organ donation on the Support Around Death website.

There may be an opportunity for children with a life-limiting or life-threatening condition and their families to consider organ or tissue donation in a range of settings from acute services, general wards, the community and hospice care.

In Scotland around 80,000 young people under 18 have already registered their wish to donate on the Organ Donor Register. One 7 year old told her family

"What good are my organs to me when I am dead? If someone can get life out of them, then that's what I want".

Knowing this made her parents decision easier when she subsequently died and donated her organs.

The Scottish Government’s Framework for the Delivery of Palliative Care for Children and Young People in Scotland highlights that:

“In order to respect the child and families’ wishes, conversations about organ or tissue donation should take place prior to death”.

Following the death of a child, many parents and families take a great deal of comfort from knowing that through donating their child’s organs or tissue, other people’s lives were saved or enhanced. It may be the case that it is the only positive outcome of an otherwise tragic situation. 

It is important if any family raises the option of organ donation during end of life discussions that clinical staff contact the specialist team in organ donation for advice and support, so that families are given the correct information to make an informed decision on donation.