Support & guidance Films, books and resources Short guidance films When your child is not expected to live Learning that your child is not expected to live is one of the most difficult things a parent will ever have to face. The enormity of what you are going through cannot be underestimated. Reacting to the news Parents we have supported at Child Bereavement UK say that their feelings range from shock and distress to numbness and denial. You may find it difficult to take things in as you struggle with a diagnosis or prognosis you don’t want to hear. It’s OK to ask for information to be repeated at the time or later on if you haven’t been able to take it in fully. Fear is a normal response - that your child might suffer, how other people will react, and how you will cope. You may also feel anger - with life, with yourself, or even with medical staff. All these feelings are natural and will be individual to you. It can help to share how you feel with someone you trust such as a friend, family member or professional. If you are told the news in a medical setting such as a hospital, there may be an opportunity to access support from a member of staff such as an end of life nurse or a chaplain appropriate to your faith, if you have one. How do I tell others that my child is not expected to live? Telling others can be daunting - letting friends and family know is difficult because telling others makes it feel real and final when you may still be struggling with the shock of the news yourself. You may want to ask someone to help you make calls for you or to help you find a form of words to let people know. Some friends or family may ask how they can help and support you. It may help to think of anything practical that perhaps they can attend to for you to take the pressure off at this difficult time. If there are other children in your family, how you tell them will depend on their age, their level of understanding, and what they already know. Be honest and don’t give false reassurances; even very young children will be affected by the sadness around them, and will pick up on differences between what you’re telling them and how you are, or what they overhear. Can I choose where my child will die? In some cases it might be possible to choose where your child will die; some families prefer this to be at home where it feels safe and familiar. Most children’s hospital wards enable you to spend time with your child and be with them when they die too, with access to the medical team caring for them. Alternatively, you can ask your medical team about referral to a hospice which can provide a calm atmosphere where the family is encouraged to be involved. It can help to talk through the options with the health professionals caring for your child to work out what is best for you and your child. In some cases it may not be possible to be with your child, or you may choose not to be with them when they die. Every family is different and you should never feel guilty or under pressure to do things in a certain way. What can I do for my child who is dying? Try to create a calm environment to make your child feel as comfortable as you can. Depending on what’s possible, you might consider bringing in something familiar and comforting to them such as a blanket of soft toy, playing soothing music, holding their hand or reading to them. What shall I say if my child asks me if they’re going to die? If a child is asking, then it usually means they’re ready to hear an answer to this question. Rather than immediately giving an answer, it can be useful to try to understand what’s behind their question. Is there something that’s led them to ask at this point, such as noticing a change in how they feel, or something they’ve been told or overheard? Ask your child if there’s something they’re worried about. This can help open up the conversation. Making memories and saying goodbye Families we’ve supported tell us that they valued the opportunity to make memories and say goodbye, where this was possible. Ideas might include taking a lock of hair, handprints or footprints, photos, and videos. Some children who know their life is limited might want to make a memory box. It can be helpful to include any siblings or other close family members in making these precious memories. You may find it helpful to watch our short animated film on ways to remember someone special who has died. After your child has died Parents often describe feeling complete disbelief and that the reality is too awful to consider. You may feel numb, empty, enraged, and exhausted. If your child has been very ill, you may even feel a sense of relief that your child’s suffering has ended; or guilt for wishing that your child’s suffering would end, or that you should have somehow been able to prevent what happened. Even if you know these feelings aren’t rational, they can be strong and exhausting. It can help to talk these difficult feelings through with a professional. The way you grieve for your child will be personal to you. Everyone’s grief is different - try not to compare yourself with others. Look after yourself Grief can make you feel physically and emotionally exhausted so it’s important to be kind to yourself and to look after your wellbeing. Don’t expect too much of yourself, just take one day at a time. Some people find it helpful to seek help from outside the family or through a support organisation. You may also find it helpful to meet other parents who have experienced a similar loss. For support when your child is dying or has died, contact our Helpline. Visit our page: How we can support you for more on our services. You can also call our Helpline 0800 02 888 40, email [email protected], or use Live Chat on our website. Manage Cookie Preferences