Bereavement

Nothing can take away the pain of losing a child and everyone deals with grief in their own way, in their own time. But we can help.

Liver UK’s support does not end when a child dies. We understand that the family starts a new, individual journey.

The information on this page is for:

Parents, family, friends and carers

On this page:

Coping with grief

There is no ‘right’ way to grieve and as a parent you will react in your own way. You’ll feel different emotions at different times and will find your needs will change throughout the grieving process.

When your child has died you need to focus on what you need to do to get through every day and night. It can feel as though your grief is all consuming and always will be but at other times it may feel more manageable. It will take time for you to feel a manageable amount of grief most of the time but this will happen.

Different members of the family can grieve differently and can have different emotions and needs at different times to you. You might find it hard to understand how another family member is feeling even though you are both grieving. Communication can be really important to help each other understand what each of you need, even if it’s time and space.

Let others know what help and support you need at this time. Often people want to help but don’t know how. Look for additional support if you need it. Liver UK does not offer specific bereavement services but can signpost you to bereavement services across the country. There are many charities and helplines offering a wide range of support – bfrom a friendly ear on the phone to counselling sessions. Getting extra support can help you to normalise feelings, allow you to share your experiences and talk with others outside the family.

Even if you don’t feel like this is helpful immediately after the death of your child you may find it beneficial further along the grieving process.

After your child has died there are many different things that need sorting out. There is no right timetable to do this or a right way to approach it. Remember that you should do what feels right to you when it feels like the right time.

We are not automatically informed when a child dies so if you can please let us know. If you feel you cannot inform us, you can ask your hospital, a friend or relative to do so on your behalf. A member of the families team will then get in touch with you, if you would like us to.

Seeking peace, comfort and hope: religious and spiritual care

Losing a child to a liver disease is an understandably enormously sad time and can be a time when we need comfort, seek to make sense of our loss and find hope and meaning. It may be helpful to you in your bereavement to have some spiritual and/or religious support.

Almost all hospitals will have a chaplaincy team (representing the most common religious communities in your area), to offer you a listening ear, a prayer or a blessing. Some will have activities and rituals which your family can take part in.

These can be a great comfort and allow you to find some peace, hope and belonging in the midst of difficult times. If a religious leader has led your child’s funeral, they would also be able to offer on-going support. Many chaplaincy teams will also offer memorial services and events during the year.

All of these people will have the wisdom to offer you support regardless of whether you have a formal religious faith or not, as we are all spiritual beings in need of human care in times of sadness.

Siblings

Children of different ages grieve very differently. There are four main concepts regarding death which children learn to understand:

that all living things must die
that death is irreversible
once a person dies their body can no longer function e.g. walking, seeing, eating
that there are physical reasons someone dies

Children will develop understanding of these over time. Most children will learn these concepts between the ages of five to seven whilst older children are more likely to understand them.

Babies and young children

Babies and very young children don’t understand death but will sense the emotions of those around them. They may become more clingy than usual. Keeping your usual routine can be helpful for them.

Pre-school children

Children of pre-school age often know of death but may not understand that death is permanent and irreversible. When talking to children about death using concrete language is important instead of euphemisms such as ‘passed away’ or ‘gone to sleep’.

Children deal with their feelings differently at this age; they may appear unconcerned at times or they can seem unfeeling as they get on with their day/play. Emotions are often expressed through play and there may be changes to behaviour, e.g. regression to behaviour of a younger child, clinginess or angry outbursts.

School aged children

School aged children are more likely to understand that death is final but they still benefit from clear and concrete language. They may have questions about death and they may not understand that everyone dies or why they die. They can sometimes believe that they may have caused the death of their sibling, e.g. ‘my sister died because I told her I hated her’.

They can need explanation and reassurance that it was not their fault. They may start to attribute death as happening to others and ask parents when they are going to die, being watchful or staying close by a parent, etc. If a child is anxious about when others may die it can help to reassure them that not everyone who is ill dies and help them to manage their anxiety which may include relaxation methods.

Children at this age may struggle to concentrate in school, may have emotional outbursts or may report physical symptoms such as tummy aches/headaches.

Teenagers

Teenagers process death in the same way as adults. They may start to think about the meaning of life and have unanswerable questions. They are more likely to engage in risky behaviours and they may experience guilt about being alive whilst their sibling has died. The death of a sibling can trigger anger and it can sometimes cause teenagers to become withdrawn.

Useful ways of helping at this stage can include:

encouraging them to talk/express feelings in a journal/ drawing/creative outlets
modelling your own coping strategies, e.g. relaxation or exercise

Don’t be worried about crying in front of your children. It can help to let them know why you’re upset and shows them it’s OK to feel sad. Give siblings plenty of reassurance that you love them and you are still there to care for them. Encourage questions. You may not have all of the answers but it can be good to discuss things.

Grandparents

When a child dies their grandparent is not only grieving for their grandchild but also for their child who is experiencing pain. It can be difficult for grandparents to know what to do or how to help.

It can be helpful if parents acknowledge the pain and grief of the grandparents and let them know how they can be helpful.

Grandparents can:

ask parents and families what they need without telling them what they ‘should’ be doing and how they ‘should’ be feeling.
not avoid talking about their lost child if they want to talk about them.
stay away from saying things like ‘I could never be as strong as you’, ‘I couldn’t cope with what you are going through’ – parents often say this can be frustrating as they have no
choice but to cope and be strong.

Liver UK support

Liver UK’s support does not end when a child dies. We understand that the family starts a new, individual journey. You can contact the support team at any time. There are a number of different services available for those who have lost a child. These include:

Anniversary cards

After informing the team of your child’s death we will send you an anniversary card every year. Many parents find this comforting, however if you don’t want to receive an anniversary card or find that after a number of years you would no longer like to receive it then just let us know.

Memory book

Liver UK has a memory book in which the name, date of birth and date of death of your child is written by a calligrapher. Children and adults of any age can be included in the book, whether or not you have had contact with Liver UK before their death. You can come and visit the Liver UK office and see the book at any time.

Having your child’s name recorded in our memory book can be a wonderful way to commemorate the life of your child. If you would like to do this please contact the support team.

Online tribute

We can help to create an online tribute to your child at Much Loved where you can share memories and add photos.

Find out how we can help

After our daughter Ellen’s death it was comforting to know that someone was there for us, to listen and answer any questions we had. Several years on they are still there for us and provide occasions which give us an opportunity to take time out to remember Ellen and celebrate her life.

- Sam and Peter Housley

Other support

There are many bereavement services which can support you following the death of your child. A number of national services are listed here. To find out about more services local to you please contact Liver UK’s families’ team.

The Compassionate Friends (TCF) www.tcf.org.uk
TCF offers online support, a telephone helpline and local support groups.

Child Bereavement UK www.childbereavementuk.org
Child Bereavement UK supports families when a baby or child of any age dies or is dying, or when a child is facing bereavement.

Cruse Bereavement Care www.cruse.org.uk
Cruse offers support, advice and information to children, young people and adults when someone dies and works to enhance society’s care of bereaved people. Cruse offers face-to-face,
telephone, email and website support.

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This content was last reviewed: March 2018

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We would like to thank everyone who helped with creating and reviewing this page. This information has been produced with input from the three specialist paediatric liver centres in the UK. And with parents and families.

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