The Loss of a Child

IT IS A SHATTERING BLOW when someone dies whom you love.  Whenever and however death comes, it brings with it intense and painful feelings.  Each and every loss is personal.  We are all unique as are the relationships we share with others.  Although bereavement affects us in very different ways the experience of others may help us to acknowledge and face the reality of our own feelings, while reassuring us that coping with the loss in our own way are acceptable and normal.

The initial feeling following a child’s death from encephalitis may be one of numbness and disbelief.  This feeling may last some weeks.  It may help you to cope with the tasks and arrangements that need to be undertaken at this time, as well as enabling you to attend the funeral with some composure.  Intellectually you know what has happened but emotional recognition will come some time later.

In these early days, family and friends often provide support and encouragement, but gradually they need to return to their own lives.  This can leave you with an overwhelming sense of the reality of your loss.  With this reality can come distress, sadness, physical pain, crying and sobbing. Your self-esteem and confidence are rocked and you are left yearning to return to life as it used to be.

There may be real fear and bewilderment at the strength of your feelings.  Anger against God, the hospital, and the doctors.  Bereavement can be followed by a continuous and disbelieving search, but we cannot get the child back, and we are left feeling frustrated and angry.

No one is left untouched by bereavement, each member of the family will be affected, to a greater or lesser extent, each will want to help and support the others but each will have an uncertainty of how to do this.   Each person will react to, and will deal with their feelings, in different ways.  Perhaps by discussing your own worries with a friend, counsellor, GP or a member of the Encephalitis Society, you may be able to find ways of helping yourself as well as your family.

Your life is shaken up by the lossof a child; your physical health may suffer, with frequent panic attacks, loss of appetite and sleep, nausea, aching limbs etc.  If this state continues over several weeks it is advisable to visit your doctor.  Whatever you do, try not to neglect yourself, allow time and space for the grieving process.

There may be a feeling of no longer being part of the normal world but rather you now belong to a race apart.  People's reactions to you have changed overnight because of their embarrassment and uncertainty.  They may expect and want you to come to terms with your grief more quickly than you feel able to, or they may simply be feeling powerless to remedy your loss.   For this reason, listed in this booklet are some organisations that may be able to help.

Remember that whatever you are personally feeling – it is right for you, it is completely normal and you will eventually learn to cope with this tragedy no matter how you feel right now.

People from other cultures may well deal with death in ways that seem unfamiliar.  People in different parts of the world have developed their own ceremonies and ways of mourning.  Some see death as part of a circle of life.  Some rituals or ways of mourning may be public and demonstrative, others may be quiet and private, and some may have fixed times whilst others do not.  Whatever way a person chooses to express their grief, you can almost guarantee that the feelings differ little.

Children themselves may not always comprehend the implications of death or bereavement, however they still feel loss in much the same way, they will still grieve and feel distressed.  Their period of mourning may be shorter than adults.  Children may feel responsible for the death of a sibling and may need a good deal of reassurance.  Young people may not speak of their grief because they can’t find the right words or because they do not want to make the adults around then feel worse.  The grief of children and adolescents and their need for mourning should not be overlooked when a child has died.  It may help their understanding to include them in the arrangements and attendance at the funeral.

Family and friends can be of most help by spending time with the bereaved person.  Being there during painful times, listening to them and sharing good and bad memories shows you love and care for them when words are not enough.  Don’t tell people to pull themselves together or that life goes on.  Allow people to mourn in the way that is right for them.  In time they will get over it but right now they may cry, scream, repeat the same stories a lot or simply be quiet.  If you don’t know what to say or how to help, tell the bereaved person, this allows them the opportunity to tell you what they need.  Don’t avoid talking about the child that has died, this will only add to their feelings of isolation and grief.  Remember that birthdays, anniversaries and Christmas can be sad and lonely times – friends and relatives can make a special contribution on those occasions.

Children in Focus

"Children in Focus" is a specialist service which has been developed by David Chadwick, who co-ordinates a group of funeral directors offering services to families at this very sensitive time.  The emphasis is on the needs of the brothers and sisters of the child who has died, as well as parents. 

David Chadwick writes:–
"Child bereavement is gradually being recognised as an area of major importance by professional bodies nationwide.  For years a small minority have campaigned to bring the needs of bereaved children to the forefront of the professional agenda.  Working in partnership with hospitals, doctors and other professional bodies, funeral directors can potentially offer immense support and practical advice to grieving families.  With the correct training they can also do a lot more to develop their services to take into account the needs of the bereaved siblings along with those of their parents.  This is important, for it is believed that where children are offered help, advice and the chance to be fully involved in saying last goodbyes through the funeral, they will be better equipped to work through the bereavement in the long run.

As parents reading this article, you may feel justifiably cautious about agreeing with this sort of thinking but it is the needs of parents that spurred the initiative called Children in Focus.

The project has been designed with a great deal of expert assistance and many months of research to offer parents a range of products and services that will help them to feel more confident about allowing their children the chance to say their own last goodbyes.  By concentrating upon the needs of siblings, we are trying to support parents as they cope with their children's questions, fears and insecurities in the months following the death." 

The Children in Focus scheme offers:–

• Practical advice and support about children's funerals
• A new range of products specifically designed to take the needs of grieving siblings into account
• A network of funeral homes available to parents in their local area through a free telephone number (see below)
• Information about related services which can offer follow up help and counselling should the need arise.

 For further information please contact: Freephone 0800 801 4881.

Organisations that can help  

The Child Bereavement Network
The Child Bereavement Project, Huntingdon House, 278-290 Huntingdon Street, Nottingham NG1 3LY 
Tel 0115 911 8070

Child Death Helpline
C/o Great Ormond Street Hospital, Great Ormond Street, London, WC1N 3JH
Freephone 0800 282 986

Compassionate Friends
53 North Street, Bristol BS3 IEN   
Tel: 0207 953 9639 (Telephone Helpline for bereaved parents – 09.30am till 10pm)

CRUSE - Bereavement Care
Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR
Helpline: 0208 332 7227 (Mon-Fri 9.30am to 5pm) 

Foundation for the Study of Infant Deaths
35 Belgrave Square, London SW1X 8QB
Tel: 0207 235 1721 (Helpline) Tel: 0171-235 0965 (Switchboard)

Jewish Bereavement Counselling Service
P O Box 6748, London, N3 3BX
Tel:  0208 349 0839   

Kokani Muslims 
127 Hamilton Road, London, NW11 9EG 
Tel: 0208 458 4677

Lesbian and Gay Bereavement
Helpline 0208 455 8894 (7pm till midnight)

London & National Association of Bereavement Services
356 Holloway Road, London N7 3PN
Tel: 0207-700 8134

National Association of Bereavement Services
20 Norton Folgate, London, E1 6DB
Tel: 0207 247 1080 (10am till 4pm)

Natural Death Centre
20 Heber Road, London, NW2 6AA
Tel: 0208 208 2853  (9.30am till 5.30pm)
Offers Advice and information to people wishing to arrange green, cheaper and do-it-yourself funerals.  Produces publication, supplies living wills and advance funeral; directive forms.

Samaritans
Tel:0345 909090
E-mail:  jo@samaritan.org
If you wish to remain anonymous, use e-mail below and reference to your name and address will be deleted before message is transmitted:  samaritan@anon/twwells.com

Sudden Death Support Association
Chapel Green House, Chapel Green, Wokingham, Berkshire, RG40 3ER
Tel:  01189 790790
This number is an answerphone and all calls will be returned within 24 hours.

Survivors of Bereavement by Suicide (SOBS)
Centre 88, Saner Street, Anlaby Road, Hull, HU3 2TR
Tel:  01482 565387 (7 days per week) 

Reading                                                                                   

Following this list of books are a number of personal stories from families who have lost a child with encephalitis. 

Through Grief
By Elizabeth Collick, Claire Rayner
ISBN 0232516820 

Facing Grief - Bereavement and the Young Adult 18-28
By Susan Wallbank
ISBN 0718828070

The Early Days of Grieving
By Derek Nuttall
ISBN 0906584299

A Grief 0bserved
By C S Lewis
ISBN 0571066240

What to Do When Someone Dies
By Paul Harris
ISBN 0852028164

I Will Remember You: What to Do When Someone You Love Dies:  A Guidebook Through Grief for Teens
By Laura Dower
ISBN  0439139619

Muddles, Puddles and Sunshine
An activity book for children to help them deal with the death of someone close. 
From:–
Winston’s Wish, The Clara Burgess Centre, Westmoreland House
80-86 Bath Road, Cheltenham, Gloucestershire GL53 7JT
Helpline: 08452 03 04 05
E-mail: admin@winstonswish.org.uk

You’ll Get Over It
By Virginia Ironside
ISBN  0140236082 

When Parents Die
By Rebecca Abrams, Dora Black
ISBN 0415200660

Your Stories - Bereaved Families

Daniel's Story

In July 1994 my two-year-old son died of encephalitis caused by a virus called cox-saxie B.  He became ill at about 6am on the Wednesday morning and by 4pm that afternoon he was in hospital in a coma. By 4am on Thursday my little son was dead.

The hospital were very good, trying to explain everything that went on, drugs that were given etc.  But they have never been able to explain why the virus took the course it did or what could have been done to save my son.  I don't think there was anything that could have been done, so maybe I'm grabbing at straws trying to find answers to my questions.

My husband and I are feeling so alone because we had never heard of this thing called encephalitis and have never heard of any other families who have been through what we have.

We are lucky in some ways as we have a lovely six-year-old daughter who has helped us so much through all this. I have enclosed a poem which, although it has nothing to do with encephalitis, has given me comfort. 

Kirsteen's Story

My wife and I lost our daughter, Kirsteen 15 years ago when she was three years old.  She had chicken-pox encephalitis. The night before she died she was dancing to records with me. The next morning we couldn't wake her.

She was taken by ambulance to an infectious diseases hospital. When she was admitted the doctor told us they had never had a case of chicken-pox encephalitis. All they could do was try to stabilise her. She died eight hours later.

When we hear parents say their child has chicken-pox it is hard not to tell them to watch their child closely as chicken-pox could lead to something worse. Until this happened to us we had never heard of encephalitis. We hope there is now a far greater understanding of the disease.

Natalie's Story

Natalie was studying for three A levels when she went on a biology field trip to Somerset.  She came back with a cold and then developed flu-like symptoms.

As she became increasingly ill her parents called an ambulance which took Natalie to hospital.  She was given a body scan and taken into intensive care.  After 32 hours on a life-support machine she died.

Four years after her death, her parents are still devastated.  Her mother, Angie, describes her daughter as a person who had it all. She was kind, loving, clever and she was just blossoming.  She said it left her and her husband feeling very guilty because if they had known what was going to happen they would have called an ambulance as soon as she became ill.

The family rang their doctor four times before calling out the ambulance but they were told to give Natalie paracetamol and fluids, remedies for a cold.  They did not know what killed Natalie until some time later. Since then, they have been trying to learn more about encephalitis and made contact with the Encephalitis Society.

The family organised a walk around Coate Water Reservoir, passing a tree planted in Natalie's memory on the way and raising money for the Natalie Taylor Research Fund, part of the Encephalitis Society.

David's Story

I recently lost my eighteen-year-old brother through the measles virus. He died on April 20th 1999.

David was a kind and caring member of the community who took an active role in many different activities.  He represented Cornwall on a number of occasions playing table tennis.  He was also was in division two of the league, he often went riding at Boskell riding centre and he helped run a youth club.   During the day he attended St Austell College where he was pursuing a course in health and social care as he wanted to be a paramedic.  His weekends were busy with the pub, college dances, golf, table tennis competitions and visiting relatives.

At Christmas we went skiing as a family.  Last Christmas, David and his brother, Matthew tried snowboarding which they couldn't get the hang of.  They were brilliant skiers and apparently if you can ski you can't snowboard.  That was their excuse anyway!  At Easter we usually went on hot holidays somewhere abroad. In the spring half-term we would go camping somewhere in England.  In August we would often camp in France. As you can see, David led an action-packed life.

Up until the beginning of December he led his life as normal, but he kept feeling funny. It was worrying him a lot so we told him to go to the doctor.  He came home quite upset and said the doctor thought he was a "nutter". A couple of weeks passed  and it was still worrying him, but he did not want to return to the doctor, believing that he would be laughed at again.

At this time, David was working and doing his exams at college. He was an organised student and a hard worker. However, in the period up to Christmas he forgot a couple of exams and some changes in shifts at work. We put the memory lapses down to stress.

We visited the French Alps over Christmas. David was aggressive, becoming angry at the slightest thing. Although he was never physically violent, it was very unlike David as he was the calmest member of the family. As the days went on, a forceful twitch developed in his right arm.  The twitch was uncontrollable and caused David a lot of pain.

We rang home and my Gran made an appointment with the doctor.  My Mum got really mad with the doctors as they didn't seem to care.  Within ten days David was in hospital.  He was there for three weeks and we spent all the visiting hours with him.  He had a throat biopsy, lumbar puncture, CAT scan – you name it, they did it.  The doctor's first opinion was that it was CJD, but as he progressed we were told it was the measles virus.

In February he could walk, talk, swim, eat, drink, bath himself and go to the toilet on his own, but by March we had to do it all for him. He couldn't communicate with us in any way.  He couldn't walk so he had to use his wheelchair or we had to carry him everywhere.  He couldn't eat so he only got fluids when we used a syringe to feed him.  Life was hell.  We couldn't help him but we kept him home with us and did our best, although our best wasn't good enough.  Doctors visited daily.  Because he couldn't communicate he was unable to tell us where the pain was. This made it very difficult.  Before he lost communication with us he said he was fed up with being ill and he was going to fight with all he had left to get through it.

On April 13 he was admitted to hospital with suspected appendicitis. They checked him out, said it was just part of the illness and this was one of the final signs. They gave him two weeks to live.  Exactly one week later, at 3.30pm David died.  Dad had come to pick me up from school as they knew I wanted to be with him when he died, and my eldest brother had gone back to Bristol. 

David was with my Mum when he took his last breath and died. I rang Matthew immediately and he came home straight away. 

For the first time in ages I walked home from school a different way that day. When I saw my Dad he was crying but I didn't believe David had died until I saw him lying there, not breathing.  He was only 18 years old.  His 19th birthday was June 17, 1999.  Everything happened so fast.  He was here, then he was gone.

The thing most people remember about David was his smile.  We miss him terribly but we try to remember how he would have felt if he knew how unhappy we are without him.  David planted an oak tree at school when he was five.  The teacher had kept it in a pot all this time. We have planted it in King's Woods so some part of him lives on.

Where are you now?

Where are you now?  I do not know,
I call your name in vain,
Your room stands waiting your return to end this ceaseless pain,
I know that you will age no more as I grow old and grey.
Your time with us was far too short, we wanted you to stay,
"Don't worry mum" you breathed,
"There's nothing we can do."
Without a backward glance you sighed and went away,
Still, I see you from the hill, you're there, the air, the sea, the trees,
But by my side you'll never be.
My tears are falling like the rain, they are no help to me,
In time my thoughts of you will fade, you'll be a memory.