Death of an Infant on NICU

 

Written by Simeon Rowley & Debbie Eade
Reviewed by Clinical Practice Committee
June 2017
Clinical Guidelines Back Newborn Services Home Page

See also

This document is an overview and for guidance. Each situation will be different and needs to be handled accordingly.

In NICU the death of an infant will usually be anticipated and there will be time for parents/whānau/family to be present. The situation will be clearly outlined and the likely course of events (and mode of death) explained. This explanation is extremely important as many people will have no experience of seeing a death occur, and may be unduly frightened by the prospect of an incorrectly imagined death that involves suffering and pain.

Parents should be encouraged to be present and to ask any family, including the child's siblings or close friends to come in for support. They may be asked if they would like the baby to be baptised. Opportunities for photography, e.g. Heartfelt, should be offered and efforts should be made to enable them to cuddle and hold the infant before, during and after death. One needs to gauge their feelings about this at the time and not force them to do anything against their inclination. Similarly after death, time should be allowed for the parents/whānau/family to be alone with the infant if they wish but an allocated staff member should be popping in and out of the room to provide support if necessary.

The parents are seen as soon as possible afterwards by a Paediatrician who must have enough time to fully discuss the cause of death. An appointment is offered for the parents to return in about 6weeks to see the consultant most involved with them at the time of death (not necessarily the named consultant for the baby)

Post mortem

Post mortem is offered as a final examination to reveal any other factors relevant to counselling, genetic or otherwise. Although most parents are keen to know about whether the circumstances might occur with the next infant, a few parents may not initially see the relevance of post mortem results. Therefore this discussion will be led by an experienced doctor who is competent in discussing the post-mortem process.

Post-mortem consent will always be requested in a culturally appropriate manner and should be fully informed. In particular, for Māori families or young parents it should be suggested that the parents may wish to ask their elders/whānau/relatives to participate in the discussion. There is also the option of a partial post-mortem (e.g. heart only) if the parents are undecided.

Coroner

Referrals to the Coroner are made immediately following death. The Coroner then decides whether the case is to be taken under Coronerís jurisdiction. The case may be discussed with the coroner at any time, day or night, if the consultant paediatrician is unsure about referral. If the Coroner takes jurisdiction, parental consent is not sought for a post mortem. However, it is important to explain to the parents the reasons for the need for a Coroner's autopsy and to note that the Coroner may consider the parentsí wishes in making a decision. They need to be aware that the police will send someone to talk with them as well. The Coronerís Autopsy Request Form CR0020 must be completed. Please note: All IV lines, catheters, NG tubes are to be left in-situ until a discussion has been had with the Coroner unless in individual cases the consultant neonatologist has taken responsibility for their removal prior to death.

Documentation

Death must be formally confirmed and recorded in the clinical notes. The additional paperwork to be completed is packed altogether. The CCN will provide you with the necessary forms for completion (they include the death certificate, cremation form, perinatal mortality summary and other such documents). You need to follow the flow chart and then sign off the Grief Paperwork Check List.

Other documents

Transportation of a dead baby
Lactation suppression - in red pack
Beyond words Ė grieving when your child has died - in red pack
Palliative care in NICU
PMMRC document (essential for annual audit of neonatal and infant deaths)

Resources

Bereavement from a twin pregnancy
Heartfelt photography
Support available for parents and family members
Journey thru loss Ė how we can help families in our care
SANDS support pack - in red pack, please give to all parents
Heavenly places memory book - in red pack