See also Deceased Baby Forms (intranet only)

On intensive care usually the death of a child will be anticipated and there will be time for both parents to be present. Where possible they should have the situation clearly outlined and the likely course of events (and mode of death) explained. This is especially important in the event of' turning off the ventilator support so that the parents are not unduly frightened by the prospect of an imagined horrible spectacle.

Parents should be encouraged but not forced to be present and to ask any family, including the child's siblings or close friends to come in for support. Opportunities for photography should be offered and efforts should be made to enable them to cuddle and hold the child 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 to be alone with the child if they wish but someone should be popping in and out of the room to provide support if necessary .Once the child has been laid out peacefully and if possible with some flowers, a photograph can be taken which can be given to the parents. This may be more comforting than previous photographs which have included intensive care apparatus etc. They may also wish to return to see the child several times.

The parents are seen as soon as possible afterwards by a Paediatrician who must have enough time to fully discuss the cause of death. 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 same circumstances might occur with the next child, a few parents may not initially see the relevance of post mortem results and it is therefore the doctor's (preferably the registrar's) duty to impart this information. One can usually explain that not only will it help other children in the future with similar problems if we know as much as possible about the particular condition causing death, but also that it is important from their own point of view if they wish to have children in the future. (It is our experience that in the past when parents have been several weeks afterwards who have not consented to a post mortem, invariably express regret for having made that decision at the time). If the parents object to a post-mortem it should be assumed that further discussion would be best carried out by another doctor and that one should not persevere to get consent. At this point the Consultant should be approached to decide whether further discussions with the parents is appropriate.

Post-mortem consent should always be requested in a proper manner and should be fully informed. In Maori families particularly and with young parents, it should be suggested that the parents ask their elders or relatives to participate in the discussion and have more family involvement if this is appropriate. This may avoid the distress which can occur when young Maori parents consent to post mortem but the grandparents and Maori elders object for spiritual and cultural reasons.

In cases which are to be referred to the Coroner (if in doubt the Coroner is happy to be telephoned at any time, day or night to discuss the desirability of a Coroner's autopsy), the consent of the parents is not sought. It is important to explain to the parents the reasons for the need for a Coroner's autopsy. The attached Coronial Autopsy Clinical Summary form must be completed. Please note that all IV lines, catheters, NG tubes are to be left in-situ but if being viewed by the parents before autopsy, tubes, lines etc, can be cut short and covered with a dressing.

Many people need to be informed as soon as possible and the following check list should be completed:

1. Paediatrician.
2. Obstetrician or other Consultant involved.
3. General Practitioner and Plunket Nurse.
4. Referring Consultant if applicable.
5. Social Worker if applicable.
6. Death certificate.
7. Post mortem consent.
8. A note for Pathologist if there are any specific questions to be answered at post mortem.
9. The Perinatal Mortality Summary sheet should be completed at the same time as the Death Certificate.
10. A clinical discharge letter should be dictated before the notes leave the nursery if at all possible, even if final arrangements, post-mortem results etc are not known. These can always be added later.
11. A follow up appointment should be made after discussion with the specialist involved. This is initially 6 -8 weeks after the death and preferably after the relevant Perinatal Morbidity Meeting discussion. An appropriate appointment letter is available with the Secretaries if desired.

NB: There is also a booklet 'Neonatal Death' in NICU which can be used as a reference relating to responsibilities of nursing and medical staff after an infant dies.