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
