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See stillbirthcre.org.au/parents
Some babies who are born alive may live for only a short time and remain with the parents while others may live for days, weeks or longer. The setting for care and the environment in which parents meet and spend time with their baby will differ. Regardless of the care setting, healthcare professionals play a vital role in supporting parents and encouraging their engagement in care giving activities before, during and after the baby’s death.29,30
It is important for healthcare professionals to understand that parents may experience difficult feelings knowing that the time with their baby will be limited. As for most aspects of perinatal grief, a wide variety of responses are to be expected. Some parents may choose not to create memories with their baby, and this should be respected.
The time parents have with their baby can be very short and therefore very precious – if it is missed it is gone forever.
One key aim of perinatal palliative care is to enable families to have no regrets about how they spend this time.18
Most parents value the opportunity to see, touch, and hold their newborn during end-of-life care.31 Refer to Section 3: Perinatal loss care for information and best practice recommendations for memory making and spending time with the baby, and ongoing support in the community.
For babies who are transferred to a neonatal intensive care unit (NICU), the unfamiliar and potentially alienating atmosphere may evoke fear and anxiety and parents may be fearful of touching or holding their baby. It is important to ensure that parents have the opportunity for time with their baby unrestricted by monitoring and other medical devices and for photos in a non-clinical environment without medical equipment. All parents should be supported to take their baby outside of the clinical environment and into a natural setting.17,29,32 Where possible, provisions should be made for the baby to die unattached to technology, being held, and out of pain.11 Maintaining privacy for end-of-life care is essential. This may involve moving babies to more private corners or sections of rooms11 or making available an appropriate space that is free from distractions or potentially upsetting items. Witnessing or becoming aware of the death of another baby in NICU greatly affects parents.
Parents more often perceive suffering in their baby compared with healthcare professionals. Concerns about pain and suffering of the baby and symptoms such as respiratory distress, agitation, and skin breakdown may be highly distressing to parents, and it is important to prepare parents and provide explanations about these responses. Anxiety about how and when the baby will die is likely to be high, and it is important to prepare parents about what to expect at the time of the baby’s death. It is essential that parents and family/whānau, including grandparents and other children, are provided with a range of support options.
In Australia, Red Nose/Sands provide specialised emotional and practical support services such as live chat with a peer supporter and a 24/7 bereavement support line. Bears of Hope also provides a range of support options including professional grief counselling and peer support, such as parent workshops and father-specific support weekends. Miracle Babies Foundation also has a 24/7 peer support helpline NurtureLine for bereaved parents following newborn loss.
In Aotearoa New Zealand, parents and families/whānau who experience perinatal loss can receive support from a range of support groups, organisations, and resources (see the Baby Loss Directory). Sands New Zealand is a nationwide parent-run network for bereaved parents that offers face-to-face support (group meetings and one-on-one) and online and print resources, as well as providing memory-making services in most hospitals.
The Australian Centre for Grief and Bereavement has developed a parents resource following the death of a baby or child titled ‘After the loss of a child’.
Evidence-based recommendation 4.4
Evidence quality: Moderate confidence
Discuss the option of community-based perinatal palliative care and ensure community-based practical, social, and emotional support is available, including care at home, outreach, hospice, generalist palliative care services with support from the multidisciplinary team so they can accommodate babies.
Consensus-based recommendation 4.5
Discuss and provide all required documentation to the parents, family/whānau and community care team members when a baby is to be transferred to community-based care including care at home, outreach, hospice, or generalist palliative services (for example birth registration, letters for transport).
Consensus-based recommendation 4.6
When a baby has died, provide parents with the option to take their baby home or to cultural, religious, or spiritual places that hold meaning for their family/whānau. Discuss these options with parents and provide accurate information about caring for the deceased baby at home.
Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine