If your baby is too unwell to survive

Sometimes babies are born so early or so unwell it is very hard for them to survive despite having intensive care. This will be a very difficult time for you and your family. Your baby will have fought so hard to have met you and spend time with you since their birth.

Whilst your baby is still alive, you may wish to make memories with them such as making prints of their hands and feet, taking photos and videos of you all together, introducing them to siblings and family they may not have met yet, reading them your favourite books and having a ceremony to celebrate their life. The neonatal team helping you to care for your baby will be able to assist you with all these things and any other requests you may have.

End of life care for your baby

If the neonatal team has spoken to you about your baby dying, they may start to change the focus of their care from active care to focusing more on maximising their comfort. This may involve doing fewer painful procedures on your baby or starting your baby on some medicines to keep your baby comfortable.

The team will discuss with you, whenever possible, about where you would like to be with your baby when they stop receiving active treatment and transition to receiving comfort-focused care. This is usually in hospital, but may be in a hospice, or even at home. The neonatal staff will support in making these decisions. The neonatal team may also introduce you to the palliative care team, who are experts in caring for babies with life-limiting conditions.

The team will also discuss with you whether you would like your baby to have a postmortem examination to find out more about the problems that have made your baby so ill. There are also some instances where the coroner may make this decision.

After your baby has died on a neonatal ward

The neonatal unit staff will support you to be able to provide care for your baby around the time of death. They will issue you with a death certificate and provide you with all the information you need about registering your baby’s death. You will be offered a bereavement appointment to talk about your baby’s care a few weeks after their death. A bereavement nurse will be in regular contact with you too.