Guidance following the death of your child

We would like to express our sincere condolences to you, your family and friends during this very sad time. We understand that this is a very difficult and painful time for you, and that it can be very confusing.

This booklet has been provided to try and help you deal with some of the practical and emotional aspects of losing someone you love.

We would also like to acknowledge and express our appreciation to all of the families that have helped us to create this booklet. Without their time and support we could not have achieved this.

Part 1: Gives information and advice on the processes and immediate practical tasks that need to be undertaken following the death of your child.

Part 2: Gives information on your feelings and emotions.

Part 3: Offers you useful numbers and other sources of support.

Part one - Keeping you informed

The role of the key worker

You should be given a single, named point of contact to act as your key worker throughout the review of your child’s death. This is the person who you can ask for information on the child death review process and who can signpost you to sources of support. Your key worker will usually be a professional from the NHS or hospice. It might be a nurse or a member of a bereavement support team. If your child had a long-term condition your family may already have an appointed professional, such as a liaison nurse whom you know and could act as your key worker Their role is to:

Be a reliable and readily accessible point of contact for you

Help co-ordinate meetings between you and other professionals

Clearly communicate information about the child death review process and any investigations that may be necessary

Be your voice at meetings between professionals, ensuring that any questions you have are addressed and fed back to you afterwards.

Signpost you to appropriate bereavement support

If you are not sure who your key worker is, or you have not been allocated a key worker, contact a named professional who you do have details for. This may be from a hospital, hospice, police or coroner’s office.

Other professionals

There are other professionals who may also have ongoing contact with you. If your child’s death has been referred to the coroner, the coroner's office will take responsibility for the case. If there is a police investigation, a family liaison officer may be appointed to support you and provide a point of contact. Other professionals can also provide support and information, they might include your GP, social worker, family support worker, midwife, health visitor, palliative care team, chaplaincy or pastoral support team.

Spending time with your child

Appointments to see your child while they remain in the hospital are managed by the mortuary team. If you wish to spend time with your child in the Woodland Suite, you can make an appointment directly with the mortuary staff on 01223 217106. Outside of office hours please contact the main switchboard on 01223 245151 and ask to speak to the on call mortuary technician.

Taking your child home or to a hospice

If the coroner is not involved, you may wish to take your child home or to your local hospice (if you have used their services in the past).If you wish to take your child home yourself there are no legal restrictions once their death has been registered, however you may prefer to ask your funeral director to arrange to transport your child home. In all circumstances the mortuary team will be involved in making the arrangements for your child to be collected. Please speak to your funeral director regarding the care of your child at home.

The Next Steps

Medical Certificate of Cause of Death

One of the doctors who cared for your child will complete a Medical Certificate of Cause of Death (MCCD). This document will be checked by our bereavement care office and a medical examiner. The medical examiner’s role is to look at all deaths and decide when a referral to the coroner is required. They sometimes contact families directly for information regarding care. If the medical examiner agrees with the cause of death, the bereavement office will email the MCCD to the registry office. You will need to make an appointment to register your child’s death in Cambridgeshire. At this stage it is advisable for you to think about whether your child will be buried or cremated, as different paperwork will need to be issued accordingly.

What the Coroner does

A coroner is someone who looks into certain types of death. Whether a coroner is involved depends on whether the death is seen as being ‘natural’ or not. This is a term used by coroners and a ‘natural’ death might include extreme prematurity (when a baby is born very early in pregnancy) or a virus, whereas deaths from causes such as road accidents and suicide would not be seen as ‘natural’ from a coronial perspective. If the cause of your child’s death is not ‘natural’ or is unknown, or if your child died while they were under state detention (for example under a mental health section), then the law requires that the death is reported to the coroner and the police.

The coroner usually arranges a post mortem examination to take place for unexpected deaths, which will be carried out by a pathologist. An inquest is held after the post mortem examination if the cause of death remains uncertain, or if the cause of death is not thought to be ‘natural.’ You can request your own representation at the post mortem, which the coroner can provide more information about.

The coroner can open an inquest at the start of the process or can decide to hold an investigation, which means a formal inquest hearing may not need to be held. It can be several months before the inquest or investigation is closed. You may want to ask your coroner’s office for the leaflet ‘Coroners and inquests, a guide’, which describes in more detail what coroners and their officers do and what happens at inquests, if one is to be held. It is also available to download from the Ministry of Justice website.

Post mortem examination and the role of the pathologist

What is a post mortem examination?

A post mortem examination, also known as an autopsy, is an examination of a person after death by a doctor who is a specialist in this, called a pathologist. Post mortem examinations for children should be carried out by a pathologist who specialises in illnesses and conditions that affect babies and children. Your child’s post mortem will be carried out on the Addenbrooke’s site.

Can you decide if your child has a post mortem examination?

If your child’s death has been referred to the coroner, then you are not able to choose whether a post mortem examination takes place or not. You can, however, make a representation about your wishes which the coroner can then consider.

If a coroner is not involved, then a post mortem examination can only take place with your consent.

The doctors who treated your child may ask for your permission to carry out a post mortem examination to help them understand more about your child’s illness and use this medical knowledge to help other patients. In this case the doctor will seek your consent and will explain exactly what is involved to assist you in making your decision. You will be asked to sign a consent form should you wish to go ahead.

Why is a post mortem examination important?

A post mortem examination may do the following:

• Find a medical explanation for your child’s death • Rule out other diseases or problems you may have been worried about
• Identify other conditions which may be important for your family to be aware of
• Provide knowledge that might be used to help your family or other children in the future.

In some cases, a post mortem may not find the cause of death.

The NHS provides online information about post mortem examinations and where to get more detailed information: Post mortem | NHS (opens in a new tab)

What happens to your child during post mortem examination?

When a post mortem examination has been ordered or consented to, it takes place as soon as possible, usually within a few days. A post mortem examination may help to understand why your child died.

During the post mortem examination the pathologist examines all the major organs and looks for any signs that might give clues as to the cause of death. The examination is conducted with the same care as if your child were having an operation.

During the post mortem examination a number of small samples need to be taken for specialist testing. These may be called ‘blocks and slides’. You will be asked what you would like to happen to these samples once the tests have been completed. You can ask for the samples to either be:

• Returned to you (the coroner’s officer will be able to discuss what you could do with the samples)
• Kept by the hospital, as part of your child’s medical record, or with your consent for use in research, future testing or other purposes, or
• Sensitively disposed of by the hospital.

Some parents have found comfort in knowing their child’s tissues might help research, or that future medical advances may give more information. The Human Tissue Authority (HTA) ensures that human tissue is used safely, ethically and with proper consent. They have produced a leaflet which tells you what happens before, during and after the examination – Post-mortem examination: Your choices about organs and tissue.

After the post mortem examination has taken place and where relevant, the coroner has given permission, you can see your child and decide where you would like your child to be before the funeral. This includes the possibility of some time at home or somewhere else such as a hospice. If it is important to you to have the funeral within 24 hours, everyone involved will do their best to enable this to happen, but the need for a post mortem examination may not make this possible

Post mortem examination results

Soon after the post mortem examination, the pathologist will write a report on the findings. If more tests are required, then this may be an initial report. If the post mortem examination was ordered by the hospital (rather than a coroner) then you will be contacted with an offer to talk about the results. You should be able to get a full copy of the report if you would like one.

For coroners’ post mortem examinations, the coroner will receive any initial findings. Where possible, with the coroner’s approval, you can be given some information about these results. The final post mortem examination report may take several months to be completed, depending on the number and type of tests conducted.

The coroner’s inquest

An inquest is a legal inquiry to:

• confirm who has died, when and where
• establish the cause of death in broad terms.

It does not involve accusations or blame. The coroner may write a report about a specific concern if they feel this might help to prevent future deaths.

If the coroner decides to hold an inquest hearing, you will be given details of when and where it will take place. You may be called as a witness, in which case you must attend. If you are not called as a witness, you can choose whether or not to attend. You can ask questions at the inquest, and you may be asked questions. Other professionals may be present. An inquest is open to the public and journalists may be present. In some circumstances a jury may be involved. Your key worker can recommend organisations to support you.

When joint agencies are involved

What is a joint agency response?

If your child died unexpectedly, or where the cause of death is not immediately clear, health professionals will work together with the police and other agencies to support you and try to understand how and why your child died. This is called a Joint Agency Response (sometimes referred to as a ‘JAR’ or ‘rapid response’)

When is it required?

A Joint Agency Response is required if your child’s death

• Is or could be due to external causes (such as an accident)
• Is sudden and there is no immediately apparent cause
• Occurs in custody or where the child was detained under the Mental Health Act
• Where the initial circumstances raise any suspicions that the death may not have been natural.

The police must be involved in any unexpected death or where there are other circumstances that might need further investigation. This does not mean you are under suspicion; their role is to act on behalf of the coroner and to eliminate the possibility that anything unlawful has taken place. There are three main stages to the Joint Agency Response:

1. Immediate response: Straight away. Your child will usually have been transferred to an accident and emergency department. Initial meetings between different professionals, such as the police and paediatrician, take place, and you will have been asked some questions about what happened.

2. Early response: Usually within the first week. All professionals involved will share information about your child. If your child died away from home, these professionals may visit the place of death. If your child died at home, particularly if your child was a baby, you will be visited at home. Usually this will be a joint visit by a health professional and a police officer. They will ask questions about what happened before and after your child died and will take a statement.

3. Later response: From one week onwards. This stage may extend over several months: More background information is gathered if required, for example health records, maternity and neonatal notes or other relevant information. The joint agency team will meet together to review the information they have gathered. They will provide information to the coroner for their investigation, and members of the team will visit you to discuss their conclusions

Deaths in the Emergency Department

All sudden deaths in the emergency department will be reported to the coroner. Please be aware that the police will be called to attend any death in the Emergency Department as part of a joint agency response. This is a normal procedure, and they will send a report to the coroner.

Registering your child’s death

You may start making arrangements for the funeral, but the death must be registered before it is possible to complete the arrangements. Your child’s death will need to be registered usually within five working days. This is usually carried out by parent/parents, a close relative or someone present at your child’s death.

Please note, if the coroner has been informed there may be a delay in registering your child’s death. The coroner will keep you informed regarding this.

Where to register

All deaths that occur in the Cambridge area must be registered within Cambridgeshire. Registration offices are in Cambridge, Huntingdon, Ely, March and Wisbech, all of which have a variety of opening hours.

Telephone Numbers

The telephone number to make an appointment at the registration office is 0345 045 1363 or you can book online via Cambridgeshire County Council.

Further information

Further information and the link to book appointments are available on the Cambridgeshire County Council website. (opens in a new tab)

What you need to register your child’s death

The Registrar will ask for:

• The medical certificate of cause of death. This is emailed to the registry office by the hospital’s bereavement care office.
• Your child’s date and place of death
• Your child’s full name, date and place of birth
• Parent’s full names, home address and occupations
• Whether your child will be buried or cremated

What documents are supplied following registration

When you register your child’s death you will receive a green form to give to the funeral director. You can also purchase death certificates and make payment by debit or credit card.

The death of a newborn baby

If your baby’s birth has not yet been registered then this must also be done at the same time as registering their death.

Bereavement Follow Up

You will receive a letter after approximately 6 weeks offering you the opportunity to come to the hospital to discuss any questions you may have about your child’s death. Meetings are arranged away from the ward or department. If you would like to visit the ward and staff, please do ask.

Child Death Overview Panels

You will receive a letter from the Child Death Overview Panel (CDOP) after your child’s death. Government legislation requires every local children’s service to review the circumstances of all child deaths aged 0-17 years. Irrespective of circumstances, they must be reviewed by a multi- agency Child Death Overview Panel. The panel will collect and analyse information about every child’s death to identify any learning needs and will recommend any changes or improvements to services for children that might prevent similar deaths in the future. Any recommendations made are passed on to the organisations that are responsible for planning and managing services for children locally, and to other relevant agencies. Parents, family members or carers will be informed of the process and given the opportunity to contribute to the review.

The Child Death Review Process is set out in detail in Child Death Review – operational and statutory guidance for professionals. You may wish to look at this if you would like more detail about the process. Child death review statutory and operational guidance England (opens in a new tab)

National Child Mortality Database (NCMD)

A National Child Mortality Database is currently being developed which will enable detailed analysis and interpretation of the information collected by CDOPs. CDOPs will start to submit information to the database by 2020. Collecting this information will ensure that deaths are learned from, that learning is widely shared, and that actions are taken, locally and nationally, to reduce preventable child deaths in the future.

If your child had a learning disability

If your child was aged 4 or above and had a learning disability, there is an additional national programme that will consider their death. This is called the Learning Disabilities Mortality Review (LeDeR) Programme. It aims to make improvements to the lives of people with learning disabilities. It looks at all deaths of children and adults with learning disabilities. The LeDeR programme works alongside the other parts of the child death review process. Your child’s death will be notified to the local LeDeR Co-ordinator, who will work with the Child Death Overview Panel. More information is available here:Learning Disabilities Mortality Review | University of Bristol (opens in a new tab)

Organ Donation

If your child was able to give the gift of life through organ donation, you will receive a letter from the specialist nurses unless you have requested otherwise.

Arranging a funeral

Many of us have little experience of death and funeral planning. Unless there are special religious or cultural reasons for holding a funeral quickly there is no need to hurry, and you can take all the time you need to make sure your child’s funeral is a memorable and personal occasion that is meaningful to you.

You do not have to wait until you have registered your child’s death before contacting a funeral director. It is possible to make your own arrangements or to choose a funeral director to help and guide you.

Funeral directors are available 24 hours a day, 7 days a week. Contact a funeral director when you feel ready. They can visit you in your home if you prefer and will help you make arrangements for the funeral. They will contact the hospital and arrange to collect your child and organise cremation paperwork, if required.

When your child is with the funeral director, you will be able to visit and spend as much time as you wish with your child. Sometimes families decide they would like their child to spend time at home, usually in the hours before the funeral. This can be arranged with the funeral director. You may also want to think about the clothes in which you would like your child to be dressed in.

The children’s funeral fund for England provides funding for burial or cremation fees and up to £300 towards additional funeral costs. Some costs are not covered by this fund such as a non-standard hearse for example a horse and carriage, flowers or the headstone.

Other Children

If you have other children, it is important to involve them in a way that is suitable to you and them. They may wish to be present at the funeral and can be involved by helping to choose poems, music and readings. They may also want to do something to remember the sibling they loved such as making a memory box, blowing bubbles or putting something memorable in the coffin.

Ways of remembering

You will be invited to an annual service of “Remembering” here at Addenbrooke’s which gives you and your family the opportunity to remember your child and light a candle in their memory.

Addenbrooke’s Hospital Chapel has a children’s book of remembrance which is opened daily and can be accessed by family and friends. If you would like your child’s name to be written in this book, then please complete the form at the back of this bereavement pack.

The Prayer Tree

Parents and families can write a prayer to be attached onto a leaf of the prayer tree in memory of their child. The prayer tree can be visited at any time at the hospital chapel.

Who should I contact?

Your child’s GP will be notified by the hospital, but some families contact them directly as well. You could ask your GP to add a flag on you and your family’s records about your child’s death so that you do not have to explain what happened at each visit

It may be useful to nominate a specific person to contact other people for you such as:

• Nursery
• School
• Dentist
• Friends and relatives

There may be other places that have your child’s details such as banks and building societies, local groups, religious organisations, clubs, dentist and opticians that you will need to inform at some point. If you joined any baby or child groups, such as supermarket clubs or online clubs, you will need to tell them that you don’t want to receive any more information. Otherwise, you may continue to be contacted with offers and information about your child’s expected progress. The Mailing Preference Service can help with this; you can register online at MPS online (opens in a new tab).

You may wish to reconsider your privacy settings on social media if there are photos of your child on there, as these could be reused without your permission if they are publicly accessible. If your child had their own social media accounts, you can either deactivate them, turn them to a ‘memorialised’ account or leave them as ‘live’ accounts. To change the accounts, you will need to provide proof of your relationship and your child’s death certificate to the social media provider.

Child benefit and other

If you have received benefits for your child, either in payments or equipment, these will usually continue for some weeks after your child has died, but the timing differs for different types of benefits. It is up to you to contact the agencies that provide your benefits, and it is a good idea not to delay this, or you may be overpaid and have to repay any overpayments. This can be difficult to do, so it might be a task you ask someone to help you with. Child benefit is paid for up to eight weeks after a child dies, but you will need to ensure that you have told the child benefit office that your child has died. You can do this either online through the GOV.uk (opens in a new tab) website or by contacting the child benefit office.

Returning to employment

Returning to employment might not be something you can consider at this stage. Employees and workers are entitled to 2 weeks' statutory parental bereavement pay if: their child dies under the age of 18 or is stillborn after 24 weeks of pregnancy. If they were employed when their child died and have least 26 weeks, on the Saturday before the child's death.

After this time you can self-certify sickness for the first week and then will need to visit your GP for a ‘fit note’ to continue to take sick leave. Try to contact your work, or ask someone else to, if you need more information about your employer’s position and your right to be paid.

Part two - Your feelings and emotions

Grieving for the loss of your Child

Emotional responses

Everyone will experience his or her grief differently. Some parents have told us that they feel a whole range of emotions as they grieve and describe it to feeling like “a roller coaster of emotions”. The death of a child can lead to strong feelings and reactions to grief, and there is no time limit as to how long this will last. It is always important to know that grief can affect us all in such different ways. Some of us might feel a deep sadness, whereas some may feel angry, guilty, lonely, or even numb to any feelings. It is normal to go through a whole range of emotions, and these could change at any time. This is why grief can often leave us feeling confused about how we are feeling and how we are responding to things.

Physical responses

Grief can also affect us physically. Some bereaved parents might experience extreme tiredness or have difficulties falling and staying asleep. Your sleep may feel interrupted, and it is possible that you might have nightmares or upsetting or unusual dreams. You might notice your heart rate increases, dizziness, muscle tension, chest pain and an overall sense of feeling heavy and slowed down. It is possible that you might lose your appetite, or feel the need to over eat. You may also experience abdominal pain and diarrhoea or constipation. It is also possible that you might experience headaches and/or migraines, as well as muscular pain.

Looking after yourself

It is very important to look after yourself, which will to help you to cope and manage throughout your grief. You might feel as though the emotional and physical pain will never leave you, and it might feel as though life no longer has any sense of purpose. Bereaved parents have shared that with time, these feelings start to feel less intense. Some parents find that being able to cry and talk about their child are helpful ways to release some of the feelings they experience. It is possible that your grief might come in waves of feeling okay and calm one minute, to then feeling a mixture of strong physical and emotional reactions the next.

In order to help you to cope with grief, it is important to allow yourself to cry. You might only want to do this alone, or you might want to cry with your partner/spouse, or with a close relative, friend, or even with a professional. It might be helpful talking to someone about what happened to your child. You could also consider writing a blog about the journey you have all been through, or you may like to join local support groups and meet other bereaved parents.

Keeping a diary or writing your feelings down can also be useful as a way to process your grief. Even though you might want to stay away from others, going outside and having a short walk, or easing yourself gently back into social activities or exercise might help you with your recovery. Of course, these things can never take away the pain you are feeling after losing your child however, they can help you with finding ways to live alongside what has happened.

As mentioned above, for some bereaved parents, appetite could decrease. Even though you might not want to eat, it is important you do so throughout the day. Eating properly will help to improve your mood and could also help you to feel better physically.

Emotional support for you and your family

Every family experiences the loss of a child differently. Many parents, both mums and dads say that they never knew it was possible to feel such sadness and that they feel a mixture of confusing feelings. The grief that is experienced after losing a child often lasts much longer than most people imagine. To help get you through this, the counsellor practitioners provide emotional support and guidance to families.

Part three

Counsellor Practitioners

Counsellor Practitioners and Psychologists.

Our counsellor practitioners and psychologists are available to help and support you and offer bereavement counselling.

Please leave a message for one of them to contact you on: 01223 216878

Alternatively, you can contact a ward or unit and speak to the nurse in charge who will contact one of the counsellors for you.

Chaplaincy

The Hospital Chaplaincy team can be contacted regardless of your religious beliefs. If you would like to speak to a chaplain about any aspects surrounding your child’s death telephone - 01223 217769 (Through switchboard 01223 245151 for out of hours contact).

Other Useful Numbers

Addenbrooke’s Switchboard: 01223 245151

PICU (Paediatric Intensive Care Unit): 01223 217715

Emergency Department: 01223 217118

Ward C2: 01223 217231

Ward D2: 01223 217250

Ward C3: 01223 217450

Ward F3: 01223 217569

Bereavement Care Office: 01223 217537

Acorn House: 01223 586806

Useful Contacts for Support

Local Support for Bereaved Children

Ormiston Families - Support for children and young people in Cambridgeshire facing grief and dealing with loss.

Helpline: 01223 292276

Keep Your Head – Information on mental health and wellbeing for children, young people and adults in Cambridgeshire and Peterborough.

National Bereavement Support for Adults and Children

Winston’s Wish - Support for children and their families.

Helpline: 08088 020 021

CRUSE Bereavement support

National Helpline: 0808 808 1677

Hope again: CRUSE website for young people

Child Death Helpline - Support for anyone affected by the death of a child.

Helpline: 0800 282 986

Child Bereavement Network - For those supporting bereaved children

Child Bereavement UK - Supports families when a child dies or when a child is facing bereavement.

Helpline: 0800 028 8840

Muslim Bereavement Support Services - Support for Muslim families after the death of a loved one.

Helpline: 020 3468 7333

The Compassionate Friends - Support for families after the death of a child

Helpline: 0345 123 3785

Papyrus Prevention of young suicide -Offers support and advice to young people who may be at risk of suicide and to those concerned about a vulnerable young adult.

Helpline: 0800 068 41 41

SANDS - Supporting anyone affected by the death of a baby

Helpline: 0808 164 3332

Lullaby Trust - Support for anyone affected by the death of a baby or young child

Helpline: 0808 802 6868

Samaritans

Helpline: 116 123

Childline - Online and phone support for children and young people

Helpline: 0800 1111

Brake - Support for victims and carers of those involved in road traffic accidents

Helpline: 0808 800 0401

Kooth - Online mental health services for children, young people and adults.

SOBS - Survivors of bereavement by suicide

Helpline: 0300 111 5065

Young Lives vs Cancer - Support for families and young people affected by cancer.

Tel: 0300 303 5220

Financial Support

Money helper

HMRC Child Benefit

Helpline: 0300 200 3100

Reference

When a child dies - A guide for parents and carers (Lullaby Trust (opens in a new tab))

They are not far, they are always near,
In the memories you hold most dear,
In the hearts that still care,
In the love that goes on,
They will never be far,
They will never be gone.

Notes:

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