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.

Reacting to the news

Feelings of shock and denial are common, and you may find yourself ‘switching off’ as you struggle with a diagnosis or prognosis you don’t want to hear. This is natural and it’s OK to ask for information to be repeated later on if you haven’t been able to take it in fully.

You may also feel anger - with life, with yourself, with your partner, or even with medical staff.

Fear is common too - that your child might suffer, how other people will react, and how you will cope. 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.

How do I tell others that my child is not expected to live?

Telling others can be daunting, but letting friends and family know, can help you cope with the news and give them the opportunity to support you.

If there are other children in the 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. 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. Most children’s hospital wards enable you to spend time with your child and be with them when they die too.

Remember you may change your mind about these difficult decisions and that’s OK. 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 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. But 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.

After your child has died

Parents often describe feeling complete disbelief, mixed with flashes of reality too awful to think about. You may feel numb, empty, enraged, or anxious. Or you may even feel 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. 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, talk to our bereavement support team on 0800 02 888 40.

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