Coping with Loss

Introduction

No two people react in exactly the same way to the death of a loved one, or to the diagnosis that their baby is going to be anything but perfect.

Here you will find information about coping with loss, talking to children about death, and supporting someone who is bereaved. You can find out about organising a funeral and creating a memory box - and you can read about the experiences of others. 

Other charities also provide useful information on bereavement:

Loss of an Unborn Baby

Miscarriage & stillborn babies

More than 1 in 6 pregnancies diagnosed with trisomy 18 or trisomy 13 end in miscarriage or are stillborn. 

The experience of miscarriage or of having a baby who is stillborn is different for everyone. What the loss of your baby means to you will be shaped by the person you and and your own circumstances. It may be that others around who have no experience of this find it difficult to understand how you feel. 

The Miscarriage Association produces a range of information leaflets about pregnancy loss. Topics include talking to children about miscarriage, men and miscarriage, and management of miscarriage. 

Sands, the stillbirth and neonatal death charity, also produces a range of leaflets and a parents' support pack. These can be downloaded from their website and cover topics including support for fathers, supporting other children, and saying goodbye to your baby.

Baby loss after termination for abnormality

This is relatively new and not well understood by those without personal experience. Parents are sometimes expected to get on with life and the loss is not acknowledged. Those around you, and even you yourself, may expect to feel better when the termination is over, but this is often not so and the weeks and months afterwards can be a time of great anger, guilt, sadness and even depression.

At whatever the stage of the termination, there is likely to be a great sense of loss and many parents describe a feeling of emptiness. There is no right way to grieve and no time limit for grief. We are all different and family and friends need to respect the way parents handle their grief in whatever way they wish. Bereavement begins as soon as a parent realises the baby has a serious problem, the dreams of a perfect child are shattered, and the future seems unsure. Some may view a termination of pregnancy as a solution and may not acknowledge your need to grieve at all. Only you knew your baby, others will not mourn in the same way, as they have no memories of their own.


Precious Memories

Precious Memories

When a baby dies during pregnancy or is still born, parents may decide to have a funeral as an acknowledgement of the baby’s life. Should you choose not to have a service, the hospital will ensure your baby is laid to rest with dignity.

Losing your baby during pregnancy or shortly after birth does not have to mean you have no memories. There are many things you can do to make these memories, such as keeping a diary or even an online blog of your baby, or start a scrapbook with the scans, cards or photographs you have. You may want to plant a special tree or flower for your child, or have their name written beautifully in the snow or sand captured in a photograph forever, or maybe you would like to name a star after your baby, there are so many alternatives.

Taking a clipping of your baby's hair that you can keep close can help you feel as if part of them is still with you, footprints and handprints can be made, or casts taken before or after your baby has died. These can then be made into jewellery or plated, and ashes can become diamonds, a permanent and beautiful reminder of your little one.

Memory boxes and chests are widely available, and you can store mementos of your child to keep as precious memories. It is important to do what you feel is right and keep whatever you want to. There is no 'proper' way to grieve and everyone is different.

Organising a Funeral

The last thing a parent wants to do is organise their child's funeral, but it does help to be a little prepared, if not on paper then in your own head. It can help to ask a family friend to lend a hand with this, as a means of support. Some people find it helps to have arranged and paid for the funeral in full before needing it, others see this as too upsetting, as if they are sealing their child's fate, The first step is to find a suitable Funeral Director, and recommendation is a good way to go about this.

Funeral Directors

The way a Funeral Director deals with clients is much more important than the size and familiar name of a company. Ring to make an appointment as it means they can set aside enough time to talk things through. The last thing you want to feel is rushed, and if you have your own ideas about what you would like, then ask. Special arrangements may be made for the release of balloons or doves for example, but these will add to the cost of your child's funeral. Some Funeral Directors will offer their services free when they are dealing with the death of a baby.

Think about the music you want, you do not have to choose hymns or music immediately, and you do not have to have a religious service or hymns if that is your wish. You may have a particular chaplain or faith leader in mind to conduct a service, or your local hospital chaplain, it is entirely up to you. Smaller caskets can be swamped by lots of flowers. You may want to limit the number of people allowed to send flowers and ask for donations to a charity instead. The funeral director should be aware of the clothes you want to dress your child in, and they can do this for you. Above all make sure you and your partner agree the funeral arrangements, consider each others wants and needs no matter how personal they may seem to you, they will have a special meaning for them.

Coping with Loss

All parents want their child to be healthy, and no two people react in exactly the same way to the death of a loved one, or to the diagnosis that their baby is going to be anything but perfect.

Parents want their child to be healthy and the knowledge that a baby has a serious chromosome defect is devastating. There are various stages of grief but we don't always follow a set pattern and not everybody needs expert counselling. However, everybody does need to share the sorrow of losing a loved one with someone. At whatever time your unborn baby, baby or child dies, no-one can really prepare you for the great sense of loss that follows.

In Shock

The initial shock brings a numbness that could be described as being on 'auto pilot'. We can function but are shielded from the full impact of what has happened. A person may be heard to be saying over and over again 'It can't be true'. C. S. Lewis wrote, 'A sort of invisible blanket between myself and the world'. This not accepting reality may lead to guilt as we recognise what has happened.

Anger and Guilt

As we question, there may be anger and guilt focused against other people; for example, doctors and loved ones also resentment against those who don't appreciate their own healthy babies. Such bitterness is quite normal but can become destructive if you are unable to share it. Parents turn to each other for support, but it is unlikely two people will experience exactly the same emotions at the same time and this can put a strain upon a relationship.

If Only

There may be a short period fantasizing when you keep thinking, 'If only.....'Then the loss becomes very real and the bereaved parent releases the sadness and may spend a lot of time weeping. This is when one feels most lonely, but it is when the healing process begins and is very important. Try to share this stage with someone you trust. Your partner may or may not be able to cope, and it seems it will never end and you may feel resentful towards members of your family who can share a joke together. They may welcome the chance to tell you their true feelings so do try to talk to them and to your children about how you are missing your baby. You will soon be ready to pass on to the next stage that is considered the most difficult because it needs a certain amount of effort to achieve. It is 'letting go'.

Letting Go

We cannot cling forever to the baby we loved and who has died. There is no benefit to either the deceased or ourselves. Avoid making impractical promises like vowing to visit the grave every day. Siblings will grow to resent this and it will achieve nothing. Letting go may awaken guilt, but you cannot rebuild your life until you are free from the burden of grief. As you let go memories become less painful and easier to cherish. See your GP if you are unable to move on and you would like some expert help through this difficult time.

Learning To Live Again

This is the final stage and since grieving uses a lot of energy you need to 'get fit'. Do some of the activities you used to enjoy but had to give up. Make new friends and spend time on hobbies and interests.

Sibling Grief

Every year thousands of children face bereavement through the death of a grandparent, parent, sibling or friend.

Adults are understandably engrossed in their own grief and children's grief may go unnoticed. However, the way in which children are helped when sad things happen may have a profound effect on how they are able to adapt to loss and change throughout their lives. For a child or young person, bereavement can be an acutely sad and difficult time, to the point of being overwhelming. Children differ in exactly how and when they respond, and what they need of others as they live through the experience

Grief - Five Simple Rules

  • Share your grief with your other children 
  • Encourage them to share their grief with you
  • Express your love with kisses and cuddles 
  • Make quality time to talk and listen 
  • Answer questions honestly

What To Say

The kindest course is to tell a child what is happening or has happened in words they understand. In the absence of a truthful explanation, children's fertile imaginations will conjure up the worst possible scenario sometimes imagining that they are responsible. Use simple phrases, answer questions honestly and say if you don't know the answers.
Children will ask what they need to know.

Young Children

Children's grief reactions are usually intense but short-lived. Young children are receptive to the grief of a parent and can become clingy, and they may sometimes refuse to go to bed alone and want to keep adults in sight. Avoid changes in the daily routine such as meal and bed times. Seeing a parent in distress is very frightening and parents should be prepared for emotional and physical responses such as tearfulness, bedwetting, and tantrums. Younger children can feel guilt and imagine they contributed to the death in some way, even by wishing the baby would go away when they experienced pangs of insecurity.

They must be reassured that the baby was different and weak, and the death was nobody's fault. Children are at a 'magical' stage of thinking, believing that the world revolves around them and they may therefore feel responsible if a baby dies. Death can be related to events in the natural world such as animals and flowers dying, and use the word 'dead' to describe what has happened to the baby. Words like 'loss' and 'taken from us' should be avoided since young children often understand language literally and may think that death is not permanent. 

Young children are not able to sustain grieving behaviour for long periods. It is thought this is likely because they are so overwhelmed by emotions that they 'withdraw' from the grief and get on with familiar routines. Their expression of sadness tends to range from bitter outbursts of crying to quiet withdrawal. There are picture books for very young children to help them understand, and they can be encouraged to express their feelings by drawing pictures and engaging in play.

Children at School

School may become the one place in their lives they feel is unaffected by the death and they might appear to be 'coping' remarkably well. Occasionally children may refuse to go to school, feeling that if they are at home they can make sure that all is well. Children may worry about breaking down in front of school friends. They may have off days when concentration is difficult, or get into arguments and fights. Teachers need to know what has happened and what information the child would like the class to know. The school should provide a quiet 'safe' space where children can spend time during the school day if they wish to rest, and someone the child can go and confide in.

Older Children

Older children will worry about the reality of death, their own and a parent. Many become over-protective of a parent and try to assume the family tasks and responsibilities, or they can be sullen and refuse to talk about what has happened. They may try to protect the adults around them by hiding their grief or giving other reasons for being sad. Some children develop vague headaches and stomach pains.

Where families are members of faith communities, children's understanding of what happens after death will reflect the teachings and beliefs of the community and what they have been taught. Children are interested in death rituals and funerals and may be happier to talk to someone outside the immediate family such as a close relative or teacher. They can express their feelings by keeping a daily diary, and new interests such as sport or music are a positive step.

Viewing the Body

Funeral Directors and hospitals have a Chapel of Rest and many families take their other children to see the body of the dead baby. Parents may be anxious about the effect this might have on brothers and sisters, but children have vivid imaginations and it is kinder for them to see, and perhaps hold the dead baby to reassure themselves the body of the child looks peaceful and is no longer alive. It may be difficult for the adults to accept this, but for the children death is a natural part of life, and they may have had experience of it with wild animals, pets and older relatives. Siblings treasure a personal keepsake or photograph.

A Funeral

Warn children this is a sad occasion and the way we say goodbye when someone dies, and involve them in the planning of the funeral.
Perhaps they can place flowers on the coffin, say a prayer or reading, or choose a favourite song or hymn. Many families have a small balloon release after a service and children can take part and release their own balloon.

Sharing Grief

Parents preoccupied with their own grief may not realise just how unhappy their other children are. Families share happiness and they should be able to share sadness and tears and understand that grieving can be a lengthy process. Don't be afraid to let your children see you cry, and tell them what has made you sad or even angry, and explain that this anger is not directed at them, and that it is tiredness that may be making you irritable and bad tempered.

Give extra cuddles to the quiet child who is suppressing their emotions in order to protect the parent from further distress. Older children tend to hide their feelings anyway and wonder if their behaviour contributed to the death. There are books written about death aimed at all age groups, and it can help to read them together and discuss the way the issues are dealt with.

Missing You

'I want to say I miss you
But I know it makes them cry,
I want to hug and kiss you
And never say goodbye,
They talked in gentle whispers
And said that you had died,
So I sit here quietly playing
And keep you deep inside'

Supporting a Bereaved Parent

If a friend or family member has been recently bereaved we may start to treat them differently. Many of us struggle to know what to say to someone who has just lost a child, a brother or sister, a niece or nephew, or a grandchild. Sometimes we may think that it is easier to just avoid them. 

The problem is that people who have just lost a loved one often need a lot of support.

Dying Matters is a national coalition led by the Council for Palliative Care. They produce a range of leaflets that may help you to keep those conversations going. Topics include :

  • I could do with a chat - how to help someone close to you who has been bereaved
  • What to do if someone you know has been bereaved
  • Talking to children about dying

Dying Matters also produces a DVD for families and professionals about how to include people with learning disabilities in discussions around death, dying and bereavement. View it in full on the Dying Matters website.

Care for the Family has website with information for those wanting to help support bereaved friends or family members.

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