We are so sorry that your child has died. We would like to offer our sincere condolences to you and your family. This booklet is designed to be of help to you, your family and those that support you during, what we realise, will be a difficult and upsetting time.
When a child dies, you and your family face a journey that was never planned or chosen. There are no right or wrong ways to feel at this time and there are no quick fixes to make you feel better. Being given a lot of information possibly feels overwhelming just now, so please take this booklet away with you and read it at a time that feels right for you.
NB. Throughout this booklet when we say ‘child’ we mean a baby, infant, child or young person.
Key contact
Before leaving hospital, you will be given the name and contact details of a member of staff that will be in contact with you in the coming weeks. They may not be able to answer all your questions, but they will aim to point you towards the help and support you may need.
Name of Key Contact:
Contact details:
What happens now?
Care of your child
Staff are here to support you to spend time with your child if this is something you wish to do. Some families find it helpful to make memories by holding their child, helping with dressing and bathing, taking photographs, or creating keep sakes such as hand and footprints. It is completely your choice as to how much of this you want to do and staff can give you more information, answer any questions and help guide you through this process. We understand that this is very personal and individual to you and your family. Should you wish any personal items to be left with your child then staff looking after you will facilitate this.
It is important that you feel included in making these memories and for your wishes to be taken into consideration. Please let us know what is important to you especially with regards to cultural, religious and/ or spiritual needs at this time.
If the death of the child has been unexpected, the procurator fiscal and police need to be involved in order to determine why the death has occurred. Your wishes will still be taken into consideration as far as possible, once they have been discussed with the Senior Investigating Officer. Hospital staff may be able to create keep sakes such as hand and foot-prints for you if this were something you would like. Police may also suggest that keep sakes be taken at a post-mortem examination, should one be required and given to you at a later date.
Organ and Tissue donation
If your child is in intensive care, organ donation can be an option at the end of their life. If you need more advice surrounding this, a specialist nurse for organ donation can provide information and support. They can be contacted through the ward staff.
Tissue donation (such as corneas and heart valves) can also be discussed as part of the end-of-life process. This can be considered in a ward setting, however must be done within 48 hours of death. Please speak to staff as soon as possible if you wish to discuss this further and they will contact the specialist nurse for organ donation and arrange for them to come and speak with you
A blessing/naming/ baptism ceremony
You may wish to have a blessing or naming ceremony for your child. Some families may wish to have a religious service while others prefer something non-religious. Every effort will be made to respect your wishes. Our hospital chaplains can discuss your wishes and arrange this with you, or you can contact your own faith leader to visit if you prefer.
Where does my child go now?
Leaving your child in the care of others can be a worrying time and there may be difficult decisions to make. If the procurator fiscal or police are involved, they will work with hospital staff and advise you about the next steps. You do not have to make any decisions immediately, please take time to ask questions and ensure you have all the information you need.
There may come a time when you decide that it is best for your child to be cared for in the hospital mortuary until the funeral director is able to take them to the funeral home. Whilst your child is in the hospital mortuary, you and your family will be able to visit if you wish. To arrange this, please speak with ward staff. Alternatively, you may ask your funeral director to take your child to the funeral home at the earliest opportunity. In this case, you would consult your funeral director regarding this.
If you have authorised a post-mortem examination or the Police or Procurator Fiscal require this, your child will return to hospital for this, and can return to the funeral director’s care afterwards. If you would like to do this, please speak with a member of staff.
Why did my child die?
After the death of a child, there may be all sorts of questions. Sometimes not knowing what happened and the lack of answers can add to your feelings of grief and shock. Professionals will be asking lots of questions and trying to find out what happened to your child. This may be a difficult time, but hospital staff and the Police are working to ensure that there are answers to what has happened. It can also feel extremely difficult having to explain upsetting details to so many people. Any of the support services at the back of this booklet have trained people to provide bereavement support at any stage of your grief.
By law, if the death of your child was sudden and unexpected, it must be reported to the procurator fiscal. They will instruct the police to gather information and investigate the death. This may mean that they have to investigate your home and remove items for their investigations. Sometimes this means that you cannot return to your home immediately. This may feel particularly intrusive and upsetting.
The Police are asked to investigate deaths on behalf of the procurator fiscal because they are the organisation who are best placed to do this. It is important to remember that the purpose of Police involvement is to help establish why your child died. Just because the Police are involved does not necessarily mean anyone is under suspicion. The role of the Police is to act on behalf of the procurator fiscal and to ensure nothing unlawful has caused the death of your child. Investigations into deaths often feel upsetting and confusing due to a lack of answers. If you have any questions about the Police processes please ask any of the officers involved who will try their best to explain things to you
A paediatric pathologist will also be instructed by the procurator fiscal to carry out a post-mortem examination to support the investigation. These processes are routine for every sudden and unexpected death of a child and are necessary and important. Once the police and the pathologist have completed their investigations, they will each send a report to the procurator fiscal.
If your child’s death was expected, medical staff may still discuss the option of a Post-Mortem with you.
The Hospital will also carry out their own review to ensure that the care provided was appropriate and identify any area for improvement. You will have an opportunity to ask questions of the review team and to be provided with a copy of the report.
Post-mortem examination
If the procurator fiscal is not involved, the medical staff will discuss the reasons for suggesting a post-mortem examination with you. This can be a very difficult yet important decision to make. There are different types of examination available, and these will be explained. You will be given some time to consider your options. The examination cannot take place without your consent and signature.
Some families may wish to discuss this further and consider their faith, cultural and religious views when making these decisions. A member of staff can discuss this with you or may suggest you speak to a chaplain to process your thoughts and feelings about this. They will not inflict their views or opinions on you, and they will not tell you what to do. If you would like to speak to a chaplain, they can be reached on the number at the back of this booklet or by speaking to a member of staff.
Post-mortem results
Sometimes the results from the examination can take several months, however this should not affect arrangements for your child’s funeral. When the report is available, you will be offered an appointment to discuss the results with staff members involved in your child’s care. If you have any concerns about when these results will be returned, you can contact your key contact who will be able to find this out for you.
Key contact
Before leaving the hospital, you will be given the name and contact details of a member of staff that will be in touch with you in the coming weeks. They may not be able to answer all of your questions about what happened to your child, but they will be able to signpost you to any practical help or supportive services at this time.
Your key contact may be someone that your family already knows and has met or may be a person that is new to you.
Name of Key Contact: ______________________________
Following the death of a child you may be offered the opportunity to meet with a consultant to review your child’s care and the results of any tests arranged. This may help you to understand what happened and ask questions.
Name of designated Consultant ______________________
Child Death Review (CDR)
Government legislation now requires that the circumstances of every child’s death is reviewed by a team of professionals using a structured process.
Due to the need to have the outcome of all investigations and tests to complete this review, it can take several months before a review meeting is held and for some families, being contacted about it might come as a shock or feel upsetting. Your key contact will be in touch and keep you informed of the review process. They will be able to explain how the review works and answer any questions you may have about the process. Importantly, you will be asked by your key contact if you have any questions or views on your care that you would like the review panel to respond to. Once the panel has finished its review, your key contact will keep you informed of the outcomes.
What do I need to do now?
Registering your child’s death
Your child’s death must be registered within eight days.
What do I need to register the death?
• The hospital team who looked after your child will send the Medical Certificate of Cause of Death (sometimes called the ‘Death Certificate’) directly to the registrar.
• Proof of your child’s full name, home address and the place and date of birth.
• Parents full names, addresses and occupations.
• Whether your child will be buried or cremated.
If the procurator fiscal is involved, they will arrange for your child’s death certificate to be issued following the post-mortem examination.
Where do I register the birth/death?
You can register the death at any Registrar’s Office in Scotland. To help you find the nearest office to you, a list of Registrars’ offices can be found on www.gov.uk/register-offices. It may be helpful to phone the office and arrange an appointment.
On completion of the death registration, the Registrar will give you Form 14. Please hand this Form 14 to your Funeral Director who can then finalise your arrangements.
Who can register a child’s death?
Either parent can register their child’s death. You can take a friend or family member with you for support during the registration process.
Special Circumstances
If an urgent burial or cremation is required out-with office hours, e.g. at weekends, public holidays etc, you should be advised to contact your normal District Registry Office telephone number. Here a recorded message will give you the telephone contact details of the on-call registrar who should be able to attend to your needs.
Further information can be found at: https://www.nrscotland. gov.uk/registration/registering-a- death
Arranging your child’s funeral
This may be your first experience of a death within your family and planning your child’s funeral can feel overwhelming. Feel free to speak to your key contact if you feel you would like some guidance, as they can signpost you to the right help and support.
Once the appropriate registration and documentation has been completed there is no legal time limit as to when the funeral takes place. However, some faith and belief traditions may require a child to be buried/cremated within a certain time.
Your funeral director can help you consider and plan your child’s funeral. We would advise you to take your time and carefully consider all the options available to you. Some of the information below may help you with these decisions.
Choosing a funeral director
There may be several funeral directors who are local to you. NHS Tayside is unable to recommend a funeral director. However, you can find information online.
You may want to think carefully about who you should approach. It is important that you are able to hold the kind of funeral you want. Funerals can be very expensive and there can be a large variation in the costs between different funeral directors, however many funeral directors do not charge for a child’s funeral.
Make sure you ask about the costs before agreeing to arrangements, as it is your responsibility to pay for the funeral. You can ask for a free written quotation. The amount of money spent on the funeral does not reflect the amount of love you have for your child.
If you should require financial assistance, please contact a Jobseekers Plus office for advice, or Funeral Link (www. funerallink.org.uk or call: 01382 458800); or your funeral director may be able to advise you.
What type of service can I have?
You may want to think about who you would like to conduct the funeral service and the type of service you would like. You may wish to use your own minister, priest or spiritual/religious leader if you have one.
Please take time to consider whether you would prefer to have your child buried or cremated. Should you wish to speak to one of our chaplains to discuss this further they can be reached on the number at the end of this booklet.
Burial
You can choose to have your child buried at a cemetery of your choice. It may feel important to you to have your child buried near your home and family, or in a sacred place in accordance with your cultural/religious beliefs. You may wish them to be buried in a place you can visit whenever you wish. In some cemeteries you can purchase a small plot of land (‘quarter size lair’), which is only suitable for a child. This quarter lair may be situated in a children’s garden/ area of the cemetery. You may prefer to purchase a larger plot (‘full lair’). This is more expensive but can be used in future as a family grave. Your family may already have a lair/plot, which can be used. Your funeral director will be able to discuss these choices with you and advise about any regulations regarding headstones.
Cremation
Alternatively, you may choose to have your child cremated at a crematorium of your choice. Cremation for babies is usually free of charge in Scotland. If it is important to have your child’s ashes returned to you, please check with your funeral director to see if this is possible. Following the cremation, your funeral director will advise you regarding the availability of any ashes and arrangements for collection. Many crematoria have a children’s garden area where you can arrange to scatter any ashes or visit. Visiting the crematorium or burial ground may help you to decide.
Comforting suggestions for the funeral
Whether you choose burial or cremation, there are several things you may wish to do which can help to provide some comfort. It may help to have a family photo placed with your child. Some parents write a personal letter or have drawings which young family members have made, to stay with their child. You may choose a special item or toy to accompany your child. However, there may be some restrictions if your child is to be cremated.
You may wish to dress your child in certain clothes or wrap them in a special blanket. Perhaps there is a piece of music, poem or song that you would like to include in the service. Your funeral director will be able to advise you of these options.
Other things to consider
Child benefit and other payments
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.
Telling other services
Your child’s GP and nursery, school or college should have been notified of your child’s death, 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.
There may be other places that have your child’s details that you will need to inform at some point, such as local groups and services, religious organisations, clubs, dentists and opticians. If you joined any baby or child groups or online clubs, you would 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 www.mpsonline.org.uk.
Social Media
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.
Taking time off work
Returning to employment might not be something you can consider at this stage. Paid leave for bereaved parents will be implemented in the future, but your work may also make their own decision about compassionate leave. You can self-certify sickness absence for the first week, and then you 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 paid leave.
How might I feel
The grieving process and your family
When a child dies, you may experience overwhelming feelings of loss and sadness, which we call grief. When and how we grieve is different for each individual. You may experience a whole range of different feelings. These feelings may come in waves and can change throughout a day or even within an hour. Grief is not a mental illness and although it can be so hard, it is normal and healthy to express grief. This may look different for everyone.
Among the feelings and emotions parents tell us they have experienced are:
• A sense of numbness and disbelief – Has this really happened to me?
• Feelings of confusion and unfairness – Why has this happened to me?
• Going over and over what happened and ‘What ifs’.
• Fear of being alone yet not wanting company.
• Thinking about potential future pregnancies.
• A feeling of deep loss and emptiness.
• Feeling the loss of a future you had hoped for.
• The feeling of guilt and the need to find an answer as to why this happened.
• Uncontrollable crying.
• The feeling that no one else understands how you feel.
• Inability to cope with day-to-day life.
• Anger that can be directed at many things/people.
All these feelings are normal and will ease in time. You may also experience some physical symptoms such as difficulty sleeping, loss of appetite, pain and poor concentration.
Sometimes your grief can make you feel so emotionally overwhelmed and/or low and may take over from other feelings. You may also experience flashbacks or intrusive memories of what happened, and these can be difficult to process. If these difficulties persist, you may want to consider seeking support from a trained professional. You can consult your GP, or you can find contact numbers for bereavement support at the back of this booklet.
Whilst family and friends can help to comfort and support you, it may be helpful to talk to someone who is not connected to you or your family, and who will listen and try to understand. Other people may see the funeral as a way of saying goodbye to your child. However, it is often in the weeks and months after the funeral that the reality, emptiness and pain of grief can feel more real.
Gradually many of these feelings will subside and become more manageable, enabling you to cope with life again. The passing of time may help, although there is no set time as to when these feelings ease.
It is normal for feelings of grief to reoccur particularly at anniversaries, birthdays or other special events. Whilst family and friends can help to support you through your grief, they are also grieving.
Information for family and friends
Supporting a friend or relative whose child has died can be very difficult if you are also grieving. If there are other children in the family, you could offer to help with childcare. You may be able to help by doing some shopping, cooking or household chores. Sometimes offering practical support like this can be a relief for some grieving parents, giving them time and space to grieve.
It is often helpful to take time to listen to the parents as they talk about their child. When you talk about their child try to use their child’s name. Looking at photographs of the child with the parents can also be very helpful. Do not worry if you become upset and cry; this happens because you care.
If you feel that you would like to speak to someone about how you are feeling, please feel free to contact one of the support numbers at the back of this booklet.
Other children in your family
Parents with other children are often anxious about how their children will be affected by the death. Children of different ages perceive and react to death in different ways. Often children cope with death much better than we anticipate.
Do not be worried if your child seems uninterested or unaffected by your child’s death. Children will grieve in their own way and at their own pace. It is best if parents can be open and honest with their child in an age-appropriate way.
Answer your children’s questions as they arise. Often questions arise when you least expect it, or the same ones can come up repeatedly.
The following guidelines may be helpful:
• Use honest words such as “Our child has died” or “Your child brother/sister has died”. Use your child’s name as much as possible.
• It may be helpful to explain to children that after someone dies, their body does not work anymore. Although it looks as if the child is sleeping, this is different, their heart is not beating, and they do not breathe.
• Try to avoid euphemisms or unclear language. Using phrases such as “Our child is now a star” or “We have lost our child” can be confusing for children.
• Consider letting your children see your child either in hospital or at your Funeral Director.
• It is important that children understand where the child has gone after the funeral. You can explain that after we die our body is either buried or cremated. It may be helpful to visit the grave with your children if you have one.
• You should inform your children’s nursery/teachers of your child’s death. You may find that your child may talk to the teacher about your child, yet they do not talk with you. It may be helpful for you to meet with your child’s teacher to discuss if there have been any noticeable changes in behavior, or concerns.
• It may be helpful to encourage your children to make their own personal memory box, similar to your own, for example, using photos, drawings and cards. This can be kept as a lifelong keepsake which can be revisited and added to if they wish.
The Archie Foundation (www.archie.org) also offer free ageappropriate books that can help to explain death to a child and support them in saying goodbye and remembering their brother or sister.
Bereavement Support
The initial days, weeks and months following your child’s death can be extremely difficult. Whatever your thoughts and feelings, grief is a normal and personal experience. It has no set time or process. Some parents find it helpful to meet others whose child has died and have found help from support groups or befrienders. You may wish to contact one of the specialist organisations at the end of this booklet that are open to you and your family at any point. Bereavement support is available in a number of different ways, whether you feel most comfortable to call or you would prefer to email, connect online or meet faceto-face.
Further help and support following the death of a child
Sudden unexplained death of a baby or child
Sudden Unexplained Death in Childhood (SUDC)
Information and support for families immediately after sudden death of an infant, child or young person at any stage in the future.
Tel: 07880 350942
www.sudc.org.uk
Scottish Cot Death Trust
Support for parents, grandparents, siblings and other family/friends following the sudden death of a baby or young child up to the age of five.
Tel: 0141 357 3946
www.scottishcotdeathtrust.org/
Lullaby Trust
Helps families who experience the sudden loss of a baby or young child, providing emotional and practical support.
Tel: 0207 802 3200
www.lullabytrust.org.uk/
Death of a child or young person
Care for the family
Support for parents, siblings and other family members following a bereavement.
Tel: 029 2081 0800
www.careforthefamily.org.uk
Child Bereavement UK
Provides support and guidance to children and young people following a loss.
Provides information and bereavement support for adults, children and young people following a loss.
Helpline: 0808 802 6161 www.crusescotland.org.uk
Muslim Bereavement Support
Supporting Muslim bereaved women who have lost a child at any stage.
Tel: 07519 820 789
Email: glasgow@mbss.org.uk www.mbss.org.uk
Bereaved children and young people
Winston’s Wish
Providing support, advice and resources to grieving children and young people following the death of a sibling.
Free Helpline: 08088 020 021 (Mon-Fri 8am-8pm)
Email: ask@winstonswish.org www.winstonswish.org/
Archie Foundation
The Archie Child Bereavement Service is offered free of charge to children and young people following a bereavement within Tayside. They provide free books and resources to support them at this difficult time.
Tel: 01224 559559 www.archie.org/
Family support following death by suicide
Survivors of Bereavement by Suicide www.uksobs.org
Support following death by alcohol or drugs Scottish Families affected by alcohol and drugs
Email: helpline@sfad.org.uk
Free Helpline: 08080 10 10 11 www.sfad.org.uk Support following death from murder and serious crime
Providing a listening ear and emotional support to reflect on your experience, ways of coping, beliefs and concerns as well as advice or access to spiritual and religious care matters within NHS Tayside.
Email: tay.wellbeing@nhs.scot
Tel: 01382 423110 (Mon-Fri, 8am-4pm)
NHS Tayside bereavement officer
Providing advice and information on practical issues following bereavement, e.g., registering a death, arranging a funeral, etc
Email: tay.bereavementtayside@nhs.scot
Tel: 01382 740522
Child Mail Service
A FREE service to help reduce the number of child related mailings you receive. www.mpsonline.org.uk
Registry Office www.gov.uk/register-offices
Money Advice Service
Providing online information and advice on your financial entitlements following a stillbirth or neonatal loss.
Funeral Link Dundee
Providing support and friendly advice how to arrange an affordable funeral.
Email: info@funerallink.org.uk
Tel: 01382 458800
www.funerallink.org.uk/
Emergency/ Crisis support
Samaritans
Call free day or night – 116 123
Email jo@samaritans.org
Breathing Space
0800 83 85 87 www.breathingspace.scot
SHOUT
Text 24/7 for crisis support on 85258
https://giveusashout.org/
Developed and reviewed by parents, paediatric bereavement liaison, medical and nursing staff and chaplains within NHS Tayside and Police Scotland
