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End of life care for babies and bereavement support

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 ideally 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 continue 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

Child Bereavement UK’s website also offers lots of support and includes some short guidance films.

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.

Bereavement support for you and your family

Services that have supported your family are best placed to discuss what type of bereavement support is available. Whether it’s counselling, therapies or spending time to remember your baby as a family, do allow yourselves to take time out of everyday life and share how you are feeling.

What bereavement support is available?

Bereavement support after your baby has died can take many forms. Sometimes the best support can be someone’s practical help or a friend just being there to listen. You may find that you need extra support, which can be provided by a range of professionals, charities, hospices and parent support groups.

Bereavement support is important for your whole family, including siblings.

Your care team will be able to advise you regarding bereavement support available locally and signpost you accordingly.

What should I say to my other children?

Grief will affect children in many ways depending on their age, experience and relationships within the family. Letting siblings know what is going on and actively involving them in what is happening can help them to cope better. It is usually best to be as clear and honest as possible, saying that their brother or sister has died so that they don’t misunderstand what you are saying.

How do I tell people that my baby has died?

There will be lots of people to inform that your baby has died – extended family, friends, colleagues. You might want to think about asking a close friend or member of the family to take on the role of sharing the information so that you are not bombarded with well-meaning questions. You can ask for a member of your care team to help with sharing the news.

Planning your baby’s funeral and celebrating their life

Planning for your baby’s funeral, or service of remembrance, is very important for most parents as a way of celebrating your baby’s life. There are many ways in which you might choose to remember and celebrate your baby, with carefully chosen words, songs (or hymns) and readings, flowers and candles.

Siblings can also find it helps them to feel involved if they can participate in funeral planning and saying goodbye in a way that is meaningful to them. If you need any help with this please speak to a member of your care team or the funeral director who can guide you through the process.

Some ideas for you as a family may include:

•       Making a keepsake box

•       A balloon or butterfly releasing ceremony

•       Writing in a book of remembrance at the hospital or children’s hospice

•       Placing something in a garden of remembrance or in another special place