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Bereavement

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 hasa serious chromosome defect is devastating.

SOFT UK would like to thank SOFT Bereavement Adviser Erica Brown, Vice President of Acorns Children's Hospices in the West Midlands, for her valuable contributions to the Bereavement and How Brothers and Sisters are Affected sections of this booklet

The world may never notice if a snowdrop doesn't bloom,
Or even pause to wonder if the petals fall too soon.
But every life that ever forms, or ever comes to be,
Will touch the world in some small way, for all eternity.
The little one we longed for, was swiftly here and gone.
But the love that was then planted, is a light that still shines on.
And though our arms are empty, our hearts know what to do.
For every single heart beat says that we love you.
Author Unknown

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 baby dies no-one can really prepare you for the great sense of loss that follows.

'There is a period of grief you go through and the need to mourn the 'normal' baby for which you have been planning and hoping.'

'I feel a bit sad that we have never been offered any formal genetic counselling, and we never had any follow up after Anna died, either from the obstetric or paediatric field.'

'When Susan died, my overwhelming feelings were those of relief that her life hadn't been prolonged. I thought that because she was severely handicapped that this would make my grieving easier. However I found myself desperately wanting her back, not with trisomy 18, but as a strong healthy little girl.'

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.

'I think any mother of an 'abnormal' child feels some guilt as if she made her child that way - she can feel as if she is not worthy to be a proper mother. To exclude her from the world of children reinforces that feeling of inadequacy.'

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.

'I still find people's attitudes very hard, even my sister in law was surprised I was still depressed. Everybody expects me to be back to normal but how can you when you feel like shouting out, “Do you know my baby died months ago and it still hurts so much it may as well be last week.”

'It took me a long time to deal with the loss of a twin. I felt resentful that I had wanted only one child, been given two and then had one taken away.'

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 which 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 ourselves or the deceased. 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.

'I think that after a few months we began to see the light at the end of the tunnel. There are obviously still tears, but it is only now that we begin to realise how few people can actually identify with what we are going through.'

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.

Memories when a baby dies during pregnancy or shortly after birth

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 private service, the hospital will ensure your baby is laid to rest with dignity. You may be asked for permission for a post-mortem, and it is up to you to agree or refuse.

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.

'When I first found out about Liam at 15 weeks I decided to start a blog for him, I anted to keep his memory alive forever and this seemed the best way to do it. I still write there 4 months after his passing, I find it helps me still and gives me somewhere to let myself go emotionally. His little feet were so beautiful and it became an obsession to have as many copies in as many different forms possible. We kept everything, even the sheet he slept on. Initially I couldn't even look at them but now I am so glad I have them all.'

'Each year we mark her birthday and by talking about her in our daily lives we are keeping her memory alive. She is too important to be forgotten.'

Funeral arrangements

The last thing any 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.

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. You need to do what you both feel comfortable with. It can help to ask a family friend to lend a hand with this, as a means of support.

The first step is to find a suitable funeral director, and recommendation is a good way to go about this. The way they deal 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.

Think carefully about the music you want, you do not have to choose hymns or music immediately, in fact you do not have to have a religious service or hymns if that is your wish. You may have a particular chaplain or religious leader in mind to conduct a service, or you can use your local hospital chaplain, it is entirely up to you.

Smaller caskets can often 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. Make sure the funeral director is aware of any clothing you want to dress your child in as they will be able to do this for you. Above all make sure you and your partner are in agreement about the funeral arrangements, consider each others wants and needs, no matter how personal they may seem to you they will have a special mean g to them.

'The last two days have been spent arranging Liam's funeral. Just when you want to curl up and die in corner you find yourself with what seems an endless list of things to do. We decided to buy a little pyjama set, complete with shawl, and I like to think of him as sleeping and his funeral as us saying goodnight, so pyjamas seemed very appropriate. We had chosen Sally, the hospital Chaplain to perform the ceremony, as she had met Liam a couple of times in his short life and prayed for him with us while he was here.’

A FATHERS GRIEF

It must be very difficult
To be a man in grief,
Since "men don't cry"
and "men are strong"
No tears can bring relief.
It must be very difficult
To stand up to the test,
And field the calls and visitors
So she can get some rest.
They always ask if she's all right
And what she's going through.
But seldom take his hand and ask,
"My friend, but how are you?"
He hears her crying in the night
And thinks his heart will break.
He dries her tears and comforts her,
But "stays strong" for her sake.
It must be very difficult
To start each day anew.
And try to be so very brave
He lost his baby too.

Counselling services

Some hospitals and health authorities have access to bereavement counselling services for parents. For example, in Leicester the LAURA Centre offers help to parents with experience of loss of a child and in Gloucestershire Winston’s Wish provides counselling and activities for bereaved children.

Personal experiences of bereavement

There is a period of grief you go through and the need to mourn the 'normal' baby for which you have been planning and hoping for nine months. I had this grief at my daughter's birth and shed many tears. But I hadn't really recognised my feelings and it wasn't until I attended a talk by a psychologist and he put my feelings into words, that I was able to cry and it was easier to come to terms with our unexpected child.’

I am 23 years old and never thought I would feel and know what I do. Dealing with the death of our child was always, to me, something that happened when you were 80.’

Freddie died shortly after birth and we had no other children to cushion the blow. To lose a first child is, it seems, the end.’

After Michael died I worried that I had not loved him enough and blamed myself for rejecting him when he was first born and I was told he had T. 13. Now I know parents can feel this way, but I wish my family would talk about him. They seem to have forgotten he ever existed.’

My husband and I still share our grief but he keeps a lot of his emotions in and is terribly upset when we talk about Leah. A Compassionate Friends group which meets locally has helped me greatly to look back and write down everything I remembered from the day she was born to her funeral. When that was accomplished I felt tremendous satisfaction.’

After Amy died we attended several bereavement sessions with two other couples who had lost infants through SIDS (Sudden Infant Death Syndrome) and spoke at a bereavement seminar. This and books helped us considerably.’

I have found out that because Louisa lived for only a few hours, not days or weeks, I felt very much as though it wasn't a real event. People didn't consider that she had been a person and consequently I was made to feel that it wasn't like a normal bereavement.’

Time with Hannah was so precious. We filled it with love and laughter so now we have many special memories of our dear little daughter.’

When Susan died, my overwhelming feelings were those of relief that her life hadn't been prolonged. I thought that because she was severely handicapped that this would make grieving easier. However, I found myself desperately wanting her back, not as she was with trisomy 18, but as a strong, healthy little girl.’

I think that after a few months we began to see the light at the end of the tunnel. There are obviously still tears, but it is only now we begin to realise how few people can actually identify with what we are still going through.’

A patient at work asked me if I had any children. I told her all about my son being stillborn with trisomy 13. Afterwards I couldn't stop shaking. I miss being pregnant and I miss my baby boy.’

I thought that I was coping up until a few weeks ago when I began to look through Cheryl's photos and from then I haven't been able to sleep. I think it is because it is getting closer to the time when she was born and sadly died.’

I feel a bit sad that we have never been offered any formal genetic counselling and we never had any follow-up after Anna died, either from the paediatric or obstetric field.’

At 2. 00am the next day the ventilator was switched off. We were taken to a private room and Laura was brought to us. She died in my arms at 3.13am. I sat and held her and cried and cried. I have photos of Laura and a lock of her hair; also her hand and foot print. Even now I look at them and cry.’

I read a poem at the funeral which meant a great deal. We wanted to produce the service sheet as a lasting reminder of the day and it has proved useful to send to people rather than trying to recount the events on the telephone .... never easy.’

BROTHERS AND SISTERS

Do not stand at my grave and weep
I am not there, I do not sleep
I am the thousand winds that blow
I am the diamond glints on snow
I am the sun on ripened grain
I am the gentle Autumn rain
I am the early morning light
I am a star that shines at night
Do not stand at my grave and cry
I am not there. I did not die.

Every year thousands of children face bereavement through the death of a grandparent, parent, sibling or friend. When someone dies, adults are understandably so engrossed in their own grief that children's grief may be 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.

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.

'After our baby died our young son thought you have a baby for a while, the baby lives for a short time, and then the baby dies. We explained that only very poorly babies that can't get better are the ones that die. The healthy ones don't die.'

'Mum was going to have a baby and the whole family was excited, especially me.
All my friends had baby brothers or sisters and I couldn't wait to play with our baby. My little sister arrived and we called her Beth. But mummy and daddy kept crying because Beth was very poorly.'

'My small son wet his bed and became miserable at home so I arranged visits to a counsellor which helped us a great deal. He is much happier now.'

'Our 3 year old expressed strong feelings about the death of his baby sister. He was angry and sad and resented her because she wasn’t there for him any more.'

'Rhiannon is 3 years old and misses Jessica too and often asks if we can have another baby that is well and will be able to stay.'

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.

'We told our children their baby sister had gone to heaven, and her body was like an empty chrysalis after a beautiful butterfly had flown away.'

Today my friend came over with a baby who is a few weeks old. My daughter Ella aged three went quiet, and when I went to make the tea she followed me and asked me if our baby Hope, who had died, had come back. She kept staring at the baby and I think she realised she didn't look the same, and once I told her it wasn't Hope she was a lot happier but very wary of the baby.'

'Well, happier times have come with the birth of Gemma. She is very, very special to us. We shall of course never forget Lee and when Gemma is older she shall learn all about him.'

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 there.

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.

'After my baby sister died it was horrible going to school and I wanted to stay at home. One teacher was very nice and I used to go to her whenever I was upset and she would give me a drink and some biscuits'.

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 keeping a daily diary, and new interests such as sport or music are a positive step.

'They told me Beth was very ill and one day I came home from school and found out she had died. That night I prayed that when I woke up my baby sister would be in her crib, but I knew it would never come true. I wish I had spent more time with Beth and I tried to help Mummy as much as I could.'

Ways of supporting children

  • Provide continuity of care and routines
  • Encourage creative play and activities such as painting
  • Talk to the child about what has happened
  • Answer questions honestly and in age-appropriate language
  • Reassure the child that they were not responsible for what has happened
  • Encourage fun and enjoyment as well as opportunities to express fears and concerns

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 to place flowers on the coffin, say a prayer or reading, or choose a favourite song or hymn.

'As we had prepared our girls for Dara’s death our older child was reluctant to attend the ceremony or funeral and particularly the cemetery. But the paediatrician insisted they go through the entire experience from holding Dara after her death to the funeral, as children need a beginning, middle and end. They have no unhappy memories and have a definite relationship with Dara to this day. We found the attitude very helpful.'

'At the funeral I didn’t cry. I think I had run out of tears. Everybody was very sad and we put a bunch of wild flowers on her coffin.'

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. A video, 'When a Child Grieves' can be obtained from the Child Bereavement Trust.

'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'

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