End of life care

Close up of nurse holding a pen over several paper documents laid out on a desk

It is not always easy to predict the time when your baby is likely to move into the final phase of their life. For some, it may only be realised hours or days before, which can leave very little time to prepare for your baby’s death.

You should already have had early ‘parallel planning’ discussions with your team and developed an Advance Care Plan which includes your wishes for your baby’s end of life care. This can be difficult if your baby’s condition deteriorates quickly, but you should be fully supported to develop an end of life care plan for your baby that identifies all your wishes and how these will be met.

If your baby dies in hospital, there should be a quiet room that is private, away from the other rooms on the neonatal unit, where you can spend time with your baby, family and friends, with a cuddle cot. A cuddle cot is a cold mattress that ensures that your baby remains cool, so that you and your family can spend time with them and enables more time to create memories. The cooled mattress can be put into any Moses basket or cot, can be placed in bed with parents, or even in their arms.

You may choose to take your baby home from hospital after they have died and you should be able to access a cuddle cot from a local children’s hospice or your hospital or community palliative care team. You may also be able to take your baby to a children’s hospice cool room where they can stay until their funeral or before being taken to a funeral director.

This is also a time when you might to capture special moments and create lasting memories. You may wish to:

• Have skin-to skin contact
• Play special music
• Take a small lock of hair
• Make handprints and/or footprints
• Make hand or foot sculptures
• Keep special toys, jewellery or ribbons
• Have a blessing performed

Your care team within the neonatal unit or a member of the hospice/ palliative care team will be there to support you throughout your baby’s end of life care. Remember, you will not have to do any of this on your own.

Where can I find more information?

We have more information on our bereavement support for you and your family page.

Do you need emotional and practical support?

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The information in this section is due for review in September 2027.