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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 has a 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

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 whathas 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 myselfand the world'. This not accepting reality may lead to guilt as we recognisewhat 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 thosewho don't appreciate their own healthy babies. Such bitterness is quite normal but can become destructive if you are unable to share it. Parentsturn to each other for support, but it is unlikely two people will experienceexactly the same emotions at the same time and this can put a strain upona relationship.

'I still find people's attitudes very hard, even my sister in law was surprised Iwas 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 Ihad 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 releasesthe 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 everyday. 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 thetunnel. There are obviously still tears, but it is only now that we begin torealise 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

Losing your baby during pregnancy or shortly after birth does not have tomean you have no memories. There are many things you can do to makethese 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 forhim, I wanted 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.'

FUNERAL ARRANGEMENTS 2

(see also Funeral Arrangements)

The last thing any parent wants to do is organise their child's funeral, but itdoes 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 fullbefore needing it, others see this as too upsetting, as if they are sealing theirchild's fate. You need to do what you both feel comfortable with. It canhelp 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 agood way to go about this. The way they deal with clients is much moreimportant than the size and familiar name of a company. Ring to make anappointment as it means they can set aside enough time to talk thingsthrough. The last thing you want to feel is rushed, and if you have your ownideas about what you would like, then ask. Special arrangements may bemade for the release of balloons or doves for example, but these will addto the cost of your child's funeral.

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

Smaller caskets can often be swamped by lots of flowers. You may want tolimit the number of people allowed to send flowers and ask for donations toa charity instead. Make sure the funeral director is aware of any clothingyou 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 thefuneral arrangements, consider each others wants and needs, no matter how personal they may seem to you they will have a special meaning 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 a wide experience of loss of a child, and in Gloucestershire Winston's Wish provides counselling and activities for bereaved children.

'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 herlife 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.'

'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 herlife 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.'

'I still find people's attitudes very hard, even my sister in law was surprised Iwas 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 Ihad wanted only one child, been given two and then had one taken away.'

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