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If a baby may die

Aim to prepare a family as thoughtfully and early as possible when a baby may die and involve them in parallel care planning for active care and end of life care.

Families are often aware when staff have concerns that their baby may die soon or at a later unpredictable time. They feel anxious if staff don’t communicate their thoughts and plans at an early stage and if there is poor continuity of care.

Families often don’t receive help on planning for the wider impact of losing a baby as care planning does not always include discussion of emotional, social, family and spiritual needs.

What do we need to do?

  • Remember to keep within the scope of your practice when providing information, explaining procedures or answering questions. Be prepared to consult with or refer to suitably trained colleagues whenever necessary.
  • Offer a quiet, private space to talk to the family, away from the cot and other families. Ideally this should be a comfortable, private room.
  • Make sure there is an ongoing discussion with the family about trying to understand if, why and when their baby may die. If the mother is unwell or in a different unit, ensure she is included.
  • Explain that it may take days or weeks to fully understand the underlying reasons. Share the known facts as they emerge, even though an underlying diagnosis or outcome has not been confirmed.
  • Use a parallel care planning approach to manage active care while thinking about end of life care, taking account of the often unpredictable nature of this time. Fully involve the family in discussions and understanding their wishes about:
  • what deterioration means and how this will be managed
  • changes in care and treatment that focus on comfort near end of life
  • organ donation
  • place of end of life care and transport options
  • care for the baby and family after death
  • memory making and family support
  • communication with primary and secondary care staff involved with the family, including the primary midwife if the mother is still receiving midwifery care, and/or the health visitor.

If a lethal has been diagnosed in utero, much of this discussion can take place before birth.

  • Let the family know a Perinatal Mortality Review will take place.
  • Ensure that family support is included in all care planning – emotional, social, family and spiritual support.
  • Try to do as much planning as early as possible so that the end of the baby’s life can be as well prepared for, and as quiet and private as possible.
  • Prioritise continuity of care in line with Getting It Right for Every Child (GIRFEC) and confirm a key contact (named person) who will support and coordinate care, including bereavement care, right through the family’s journey.
  • Record the care plan on the baby’s record including planned continuity of care and key contact.
  • Sometimes a baby dies unexpectedly and quickly. In this situation, staff should focus on explaining known facts, end of life care and memory making.
  • If parents have had a multiple birth, they face the challenge of preparing for the possibility their baby/babies may die whilst caring for their other baby/babies. Support the family by focussing equally on the baby/babies who may die and the sibling or siblings.
I wanted care and compassion. I didn’t want medical jargon. I wanted someone by my side who genuinely cared and understood how anxious we were.
I wanted hope. I didn’t want to discuss him dying yet. He was still alive and I wanted to make this time precious by reading to him, rubbing his feet and playing music. This allowed me to spend time being
his mum rather than focusing on the fact he might die.

How will we know we have achieved our aim?

Families will tell us they felt well supported and prepared and they had time to consider their choices.

Staff will say they feel confident and competent involving families at an early stage and being guided by their wishes.

Go to When a baby is deteriorating and dying

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