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'Notes for Adults' - guidance to help families affected by the death of a baby

Updated: Jul 2, 2022

Please find below the section that appears at the end of These Precious Little People for ease of reference for anyone needing some guidance on how to support children affected by the death of a baby, and how to seek additional support and advice where necessary - including updated contact details for UK support organisations. If you know of any I can add to those listed, please get in touch. If you would like to order a copy of These Precious Little People to read in its entirety, please click here.

This book was written to read with children who are affected by the death of a baby. The focus is usually on the bereaved parents when a baby dies but there are very often children who have to be told the news. This book is intended to be a framework from which to open up conversations where the circumstances specific to each baby can be explained more fully as appropriate. It is also a book that can be read with children to support them as the family grieves and remembers the baby together over the weeks, months and years that follow. Some children will have been born into a family after the baby died, so they will have no memories of the pregnancy or meeting them, but it doesn’t mean they will not also think about what could have been had the baby lived, and mourn them. Many families introduce the subject of death early, and talk about the baby who died regularly, in conversations that are largely child-led and flow naturally. This means that their living children grow up developing their understanding of what happened to the baby who died at a pace that suits them.


A child’s concept of death and their ability to comprehend what has happened will vary greatly according to their stage of development and any previous experience of bereavement. The way in which families will want to broach the subject will also vary according to their own belief system. However, keeping details simple and factual is often the best way for children to absorb the information. Some children may not react when first told, and it might be that repeated explanations are required as they process what has happened; especially very young children, who find it difficult to grasp the permanence of death.


It is advisable to stick to matter-of-fact language that children won’t inadvertently be confused or scared by. By using the words ‘dead’ and ‘died’ instead of ‘miscarried’, ‘passed away’, or ‘gone’, even if they have no prior knowledge of death, should reduce the possibility of a child misunderstanding or misinterpreting what is being said. For example, the way that adults sometimes describe stillbirth as a baby being ‘born sleeping’ might lead to a child feeling anxious about what could happen when they or others go to sleep, or hoping that the baby who died will one day ‘wake up’. A child being told about ‘losing’ the baby could make them wonder why better care was not taken of the baby so that it didn’t get ‘lost’, or if there is a chance that the baby who died could be ‘found’. It’s usually better to keep things short and unambiguous (e.g. “the baby died, which means their body doesn’t work anymore”), and answer any questions as they come using honest and straightforward explanations.


Death can be hard to come to terms with at any age, but children who have never encountered it before are unlikely to have the information they need to understand what has happened. They may have many questions about what happens when someone dies, whether the baby will come back, why they died, what happens to their body, whether other people are going to die and who or what is to blame. Some children may need simple physical comfort – lots of warm cuddles – rather than long, serious discussions. Some will need reassurance that the death of the baby was not in any way their fault. They might not be deeply upset themselves, or at least not appear to be, but if people around them are devastated it will reassure them to hear that it’s very normal to cry and to be sad about what happened, that these feelings or atmosphere won’t last forever, and that it wasn’t anything they did wrong. They might suddenly become a lot more aware of the fragility of life, and need to hear that death usually only happens to people who have lived a long and full life, and that there will always be someone around who will take care of and love them.


Maintaining a routine as far as is possible can help. Alongside this, listen and watch carefully. A child’s grief is real, and can be very intense, but they might not have the verbal skills or emotional maturity to express their feelings in the way an adult can. Some children seem fine, at least initially, and may even behave better than they did before news of the death. For example, they may be quieter and calmer. This can be a sign that they’re hiding emotions, putting on a brave face, or are simply trying not to upset others. If it is made clear that they can ask or express anything, whenever they need to, it will be possible to follow their lead to a large extent about what they would like to know about what has happened and what support they might need. Look for changes in behaviour that could indicate feelings or worries. Don’t assume that a child is coping because they seem to be playing and laughing as normal, but, equally, don’t be alarmed if they suddenly act in ways they did when they were younger. Regressive behaviours are natural reactions and will pass. Children can be encouraged to say or write what they are thinking or feeling with words but make opportunities for alternative expression too – some children are more able to release their inner thoughts and feelings through play. As they play, children may become less guarded and more apt to share their deepest emotions without feeling pressured. Allow them to do this in their own time and with their own method of communication – perhaps by drawing, painting or making something for a scrapbook or memory box. Other ways of getting creative or using their imagination can include role play (with or without dressing up clothes or toys), or creating things with play dough.  

Image of a baby surrounded by hearts and two teddies, captioned 'Esme'
My son and I drew & coloured in this picture of Esme for her scrapbook

People who have regular contact with or responsibility for your child or children will also need notifying of the baby’s death. This helps teachers, childcare providers, healthcare professionals and other people who spend time with them to understand and make allowances for any changes in behaviour or possible impact on their development or health. It is useful to explain what they have been told, the words used, and an indication of what they understand already. This should minimise the chances of confusion caused by differing explanations from adults around them about what has happened.


Grief does not play out in neat ‘stages’; it’s normal to experience peaks and troughs of it gradually feeling less of a burden and then suddenly feeling challenging again. Fresh waves can be triggered by their birthday, family gatherings during which the baby’s absence is more marked, the anniversary of their death, or their due date. Memory making and rituals involving living children can be beneficial, but do what feels right for you and your family; anything you choose to do – or not do – should not be seen as a measure of your love and grief. It is also normal to feel differently over the years – keep exploring with all involved how to mark special days. This book and our website have some suggestions of what can be done to bring comfort at any time they are thought about and missed. You could visit somewhere to create treasured memories in their honour, make a charitable donation in their name, bake a birthday cake, hang Christmas tree ornaments or a stocking for them, create a memory corner with special items or plants in your home or garden, light candles, or add items such as cards, poems, pictures, or letters to a memory box or scrapbook.


Children tend to move through many emotions and reactions very quickly: it is sometimes described as 'puddle jumping' (while adults may wade through rivers of grief or become ‘stuck’ in the middle of seas of distress). It is natural for them to be extremely upset one minute and then want to know what is for tea: it does not mean they are not distressed by what has happened. Letting children know that they can talk about what they are feeling, answering questions honestly, and picking up on their worries to try and reassure them, could all prove difficult to navigate if you are grieving intensely. Try to ensure that you are looking out for yourself too – seek assistance from those who can help your family if you are struggling as you might benefit from more specialist or intensive support. If you are caring for a bereaved child and you are worried about the way they are reacting, you can talk through any concerns with bereavement support services. Some organisations that you can reach out to are:


Angus Lawson Memorial Trust

In the resources section is an interactive workbook, 'My book about our baby who died' that can be downloaded for free and printed out for use by a parent or prime carer of young children. With the supervision of an adult, a child can draw and write about themselves, their family & friends and about the baby who died.


Bliss - the special care baby charity

Support, advice and information for families of babies in intensive care and special care, including for bereaved families.

Email: hello@bliss.org.uk


Child Bereavement UK 

Supporting families when a child dies and when a child is bereaved. Support and information: 0800 02 888 40. Email: support@childbereavementuk.org


Joel The Complete Package

A charity supporting families through pregnancy and parenting after baby loss.

Support and information: 07591 740287. Email: support@joeltcp.org


Miscarriage Association

Support and information for those affected by pregnancy loss.

Helpline: 01924 200 799. Email: info@miscarriageassociation.org.uk


Star Legacy Foundation – www.starlegacyfoundation.org

Star Legacy Foundation is a US-based non-profit organization dedicated to reducing pregnancy loss and neonatal death and improving care for families who experience such tragedies.


Sands

Sands in both the UK and Australia support families affected by the death of a baby during pregnancy, labour or shortly after birth. UK Helpline: 0808 164 3332. UK Email: helpline@sands.org.uk


TAMBA Bereavement Support Group – www.twinstrust.org/bereavement

Support for families who have lost one or more children from a multiple birth. (Part of the Twins and Multiple Births Association – TAMBA). Email: bereavementsupport@twinstrust.org


Winston’s Wish – www.winstonswish.org.uk

A UK charity offering help and support for bereaved children and anyone supporting them.

Helpline: 08088 020 021 Email: ask@winstonswish.org


Please see the Support Links page for further signposting to numerous organisations that provide support and/or guidance on how to talk to children about death & grief. There is also a list of small charities and not-for-profit groups that are working hard to provide support for children affected by the death of a baby, including through the provision of sibling memory boxes, teddy bears for comfort, specialist counselling services, and peer support groups.

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