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When a baby is deteriorating and dying

Aim to tell families early when their baby is becoming more unwell, in a kind and clear way and plan the end of their baby’s life sensitively and compassionately. 

Families tell us they want to be told whenever their baby is becoming more unwell and that not knowing what this means can add to their anxiety. They say that it is very important to them to have had choices about the end of their baby’s life and for their wishes to be respected.

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.

First Steps

  • Explain what has happened, what is known and what happens next.
  • Review the family’s care plan and their wishes about care as their baby becomes more unwell and end of life care.
  • Be clear about whether the baby is nearing end of life and try to give a sense of timescales if they can be predicted.
  • 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.

End of life care

  • Provide a quiet, private space to talk to the family and give them time to absorb the news. Ideally this should be a comfortable, private room.
  • Check the care plan (see If a baby may die):
  • make sure the family remain fully involved in planning
  • listen carefully and provide enough time for them to think about their wishes
  • let the family know they can change their mind and any timescales that would limit other choices.
  • Ensure the family understands the planned changes in care up until the end of life, and that their baby will be kept pain free and comfortable throughout.
  • Review choices about place of end of life – in the hospital, at home or a hospice or another location and transport options. If in the hospital, provide a quiet, private room.
  • Explain what to expect in terms of the changes in the baby’s appearance and responses as the baby dies. Talk about the opportunities to cuddle, bathe and dress their baby and to use a Cuddle Cot.
  • Check primary and secondary health professionals have been made aware the baby is dying and know what is happening next. Include the primary midwife if the mother is still receiving midwifery care, and/or health visitor. Remember staff from another hospital if the baby was transferred for care.
  • Make sure all staff on the unit are aware what is happening so they can be sensitive to the family’s needs, dignity and privacy at this time.
  • Think about other families on the unit who will be aware that a baby is dying and how
    to communicate and support them.
I didn’t want to stay too long with him when he got cold and changed as we had spent weeks together when he was alive. We knew when the time was right to say goodbye. We tucked him in his Moses basket and kissed him goodnight.
I didn’t want to watch him die. I asked to hold him while my husband sat next to me and we cradled him in our arms. I told him he could go and watched him as he took his final breath. When he died he looked absolutely beautiful. No apparatus or medical attachments. He was perfect and this is how I will always remember my son.

How will we know we have achieved our aim?

Families will tell us that they understood when their baby was becoming more unwell and had this explained to them in a sensitive manner.

Staff will say they feel confident and competent to discuss deterioration and plan end of life care with the family.

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