A practical guide for parents
Making arrangements following a bereavement
A butterfly lights beside us, like a sunbeam... and for a brief moment its glory and beauty belong to our world... but then it flies on again, and although we wish it could have stayed, we are so thankful to have seen it at all.
Anon
The death of a baby is a very distressing and painful time. Even at this most difficult of times there are certain things that have to be dealt with; this booklet aims to provide some help and advice during the early days of your bereavement.
We hope that it will help you at this sad time, particularly with some of the practical and official matters. A member of the bereavement support team will contact you within the first few days of you leaving hospital, to assist you with making the practical arrangements.
If you have any questions or want to discuss anything, before we contact you, please feel free to contact us on 01271 322404.
Our office hours are Monday – Friday, 9am – 4pm. We do not work weekends or bank holidays but messages can be left on our secure voicemail facility and we will get back to you as soon as possible.
Late pregnancy loss is defined as pregnancy loss after 14 weeks gestation.
Late miscarriages are less common than early miscarriage and occur in about 1-2% of pregnancies.
Structural
A weak cervix or one that dilates too soon can lead to late miscarriage.
Infections
This is quite rare however; any severe infection that develops during pregnancy could result in miscarriage. These may include a urinary tract infection or kidney infection, food poisoning, infections of the blood such as hepatitis, human immunodeficiency virus (HIV), rubella and toxoplasmosis.
Others
Rare structural problems; these can be problems such as an abnormally shaped womb or large fibroids that grow in the womb. These can inhibit the attachment of the placenta or the baby’s growth and may lead to miscarriage. Genetic factors, blood disorders i.e. Antiphosphoidlipid syndrome (a syndrome
where the blood is more likely to clot), thrombophilia (an inherited condition), immune factors, diabetes and epilepsy can all be potential factors resulting in miscarriage. Sometimes there is no underlying problem and most couples are likely to have a successful pregnancy in the future.
Medical management (taking medicines)
As with early miscarriage this can be used to treat late miscarriage. This involves taking one oral tablet and then returning 48 hours later for a series of tablets and/or vaginal pessaries to help the neck of the womb open and allow the pregnancy to pass. Once admitted for the second dose of medication the process may take from a few hours up to a few days. You may experience some bleeding or spotting for up to two weeks after your delivery.
Expectant management
To await events at home. Regular blood tests will be taken to assess for clotting disorders. A review date will be given so that you can discuss delivery with the Consultant Obstetrician.
Unfortunately some pregnancies do not progress as planned. Some babies are found to have serious anomalies. Anomalies can be found on an ultrasound scan or on diagnostic testing during the pregnancy. Some babies have more than one anomaly. Depending on the extent of an anomaly, parents could be faced with very difficult decisions and options about ending the pregnancy.
Throughout this time and indeed when an anomaly is first confirmed it is very common for parents to feel a range of emotions including a deep sense of sadness, anger and guilt although it is recognised that how parents react is very individual. Parents are encouraged to access information by a charity called Antenatal Results and Choices (ARC). Parents are usually given an information leaflet from ARC by the screening team.
Throughout this time parents are always given time to think about their decisions and will have opportunities to have questions answered. Equally parents are always supported by a team of staff, including midwives, consultants and chaplaincy if wished. This helps parents to make decisions
about various issues such as how the pregnancy is ended, making memories of their baby and further investigations.
(a baby born after 24 weeks showing no signs of life)
(a baby born showing signs of life)
Every parent’s experience is individual, and every circumstance is different, but the death of a baby can bring a grief that is deeper and lasts much longer than most people realise.
You may feel shocked and numb, especially in the first few days after your baby’s death. You may find it hard to take in what has happened, and also hard to understand and remember what people are saying.
Many bereaved parents have physical reactions to grief. You may have palpitations or chest pains; you may have a lump in your throat or butterflies in your stomach.
You may not feel like eating anything and you may feel exhausted but find it difficult to sleep. You may be physically as well as emotionally drained.
All of these reactions are common and normal.
Please do not feel that any choices or decisions need to be hurried.
Make decisions at your own pace, giving yourself time to deal with the vast array of emotions you will have.
At the back of this booklet there are contact details of some organisations that may be able to offer you advice and support.
A post mortem examination can be very helpful in identifying why your baby has died. Although a post mortem does not always find a definite cause for your baby’s death it may tell you what did not cause it.
Some parents are certain from the beginning that they want a post mortem, others may not be sure. It is your decision (except in a Coroner’s case). Take time to think it over and if you have any questions or concerns your doctor or midwife will be able to talk it through with you. You can also call and speak to a member of the bereavement support team on the numbers given at the back of this booklet.
Before you leave the hospital you will be given a ‘Stillbirth and Neonatal Death’ charity (SANDS) bereavement book which contains lots of helpful information.
On the following pages we have given a brief summary of the post mortem process but recommend you also read the SANDS booklet as this may answer any further questions you have.
The doctor or midwife will ask you if you wish to consider a post mortem. Unless it has been ordered by the Coroner, a post mortem cannot be done without your consent.
A trained member of staff will go through the consent form with you and there will be opportunities for you to ask questions and make sure your preferences are noted.
Some questions you may wish to ask about the post mortem examination are:
• When it might be carried out
• Where it will take place
• How long it will take
• When the results will be given to you, and who you can discuss them with
• When and from whom you can get a copy of the results
Once the consent has been taken, you will be given a 24 hour ‘cooling off’ period to change your mind should you wish to do so.
The post mortem will take place at a specialist hospital. Your baby will be transferred to the specialist hospital by our contract funeral directors and will be returned to the North Devon District Hospital once all examinations are completed. As part of the post mortem process, small samples of tissue from the organs may be taken for more detailed examination under a microscope. With your agreement these tissue samples will be retained as part of your baby’s medical record. This is so that they can be re-examined in the future to try and find out more if new tests or new information become available. If you do not agree to this, all tissue samples will be returned with your baby after the examination.
The post mortem process can take several weeks depending on the examinations required and what you would like to happen to the tissue samples after the examination.
We will contact you once your baby has returned from the specialist hospital and ask you if you have come to any decisions regarding your baby’s funeral.
The results can take several months.
Once the post mortem results are available, your consultant’s secretary will arrange a follow up counselling appointment during which the results will be discussed with you.
If you choose not to have a post mortem, with your consent the placenta will be sent to the histology department for histological examination. This is part of the investigation process to try and identify a cause of death. The placenta is also screened for any infections that may have been present.
It is recommended that in some circumstances a sample of placenta is taken for examination. This can be particularly useful in identifying genetic causes of fetal loss.
If you have any further questions about the post mortem examination, the doctor, midwife or one of our bereavement support team will be happy to answer these for you.
Occasionally the Coroner will order a post mortem to find out why a baby has died, although this is rare for a baby who is stillborn, or dies very shortly after birth.
If this is the case the post mortem is required by law and you will not be asked for your consent to the examination; you will however be asked for your consent to take small tissue samples, as with a hospital post mortem. The Coroner’s Officer will contact you to explain the procedure and to make sure you understand why the post mortem has been requested. The Coroner’s Officer will contact you again once the post mortem is complete; to give you the results and they will explain what happens next.
Babies born before 24 weeks gestation
As your baby was born before completing 24 weeks gestation, there is no legal requirement to register his or her birth or death.
Maternity will offer you the chance to have a certificate to mark your babies passing. You can also apply for a certificate from the government via the following website https://www.gov.uk/request-baby-losscertificate
Babies born after 24 weeks gestation
Babies born after 24 weeks gestation and not showing any signs of life are referred to as stillborn. Stillbirths should be registered within 42 days. To register the stillbirth a medical certificate of stillbirth will need to be issued by the doctor or midwife caring for you. The bereavement support team will ensure this is electronically sent to the registration service who will then call you to make an appointment. You will be able to register anywhere in Devon excluding Plymouth or Torbay.
When you attend your appointment at the Registry Office, the Registrar will give you a certificate of registration of stillbirth. This simply confirms that the stillbirth has been registered –there is no charge. If you want a full certificate of stillbirth, which is a certified copy of the complete entry in the register with names and other details, there will be a small fee for this.
Please note:
For unmarried couples, the mother needs to register the stillbirth herself. If another parent’s details are to be recorded on the certificate they must be present at this time. Further information is available on the GOV.UK website www.gov.uk/register-stillbirth
Neonatal death, a live born baby who died before the 28th day of life
If your baby was born and showed signs of life but died before the 28th day of life the Medical Examiner will ensure that a medical certificate of cause of death is issued by the hospital doctor and is electronically sent to the registration service on your behalf. The Registrar will then contact you to make an appointment for you to register your baby’s death. They will ask you if you wish to register the birth at the same appointment.
When you attend your appointment at the Registry Office the Registrar will give you a short birth certificate. This simply confirms that the birth has been registered – there is no charge. If you want a full certificate of birth, which is a certified copy of the complete entry in the register with names and other details, there will be a small charge for this. A small charge is also made by the registration service for the death certificates.
The Registrar will also electronically send a green form to permit burial or cremation to your chosen funeral director.
The Registrar’s office can be contacted on 0345 155 1002.
Please note:
For unmarried couples, the mother needs to register the birth herself. If another parent’s details are to be recorded on the certificate they must be present at this time.
Dependent upon the gestational age of your baby there are various entitlements to financial support and taking time off work. The different provisions are set out below.
Unfortunately, as your baby died before 24 completed weeks of pregnancy, you’re not entitled to maternity benefits.
This includes Statutory Maternity Pay, Sure Start Maternity Grant and additional Healthy Start vouchers.
If you’re an employee, you’re entitled to Statutory Sick Pay and you should be able to get compassionate leave. Even though you won’t get benefits, it’s still important that you tell a few key people what’s happened so they can sort out the paperwork.
The best way to do this is usually to call or, where possible, email. If you can’t do this yourself, you might be able to get a relative or close friend to make some of the calls for you.
Talk to your employer about what they can offer you or check your contract of employment. Most employers offer compassionate leave to bereaved parents as part of their basic contract of employment or employee benefits. Your employer will also take care of cancelling any maternity or paternity pay that you might have arranged. Your maternity exemption certificate can be used until the expiry date for prescriptions in England.
Entitlements to free dental check-ups and treatment vary by country. You can use any Healthy Start vouchers you already have. If the Job Centre have been organising a Sure Start Maternity Grant and/or Maternity Allowance for you, you need to tell them that you’re no longer pregnant.
Following the loss of your baby you would normally be entitled to:
• 52 weeks Maternity Leave
• 2 weeks Paternity Leave
• Statutory Maternity Pay – if you’re employed
• Paternity Leave Pay – if you’re employed
• Maternity Allowance if you’re not entitled to Statutory Maternity pay
• Talk with your employer about what you may be entitled to or check your contract of employment
You may be asked for evidence to get financial support. This would be the certified certificate from the Registrar’s office. You are still entitled to free prescriptions and NHS dental treatment for at least 12 months. Ask your midwife for form FW8.
You will be entitled to Child Benefit for the period from the birth until eight weeks after your baby died. You might also be able to claim tax credits until eight weeks after your baby died. Further information available on the GOV.UK website.
Keeping mementos of your baby can help the grieving process. If you would like to make a memory box, Maternity or SCBU (Special Care Baby Unit) can provide one for you. Some of the keepsakes we can provide are:
• Hand and foot prints
• Hand and foot impressions (if possible)
• Photographs – SD card provided, and use of camera
• Name bracelets
• Umbilical cord clip (if available)
• Cuddly toys
• Key rings
Saying goodbye to your baby is a painful process but many parents find it helpful to see and hold their baby. If you want to see your baby and spend some time with him or her, this is possible straight after the birth or for the first week following delivery. If you choose to see your baby at a later date you can contact the bereavement support office to arrange this.
You may wish to dress your baby in clothes you have brought in for them or you may want a member of staff to do this for you. We are happy to help you with this.
Please inform us if there are any specific religious or cultural practices which you wouId like to carry out for your baby. The hospital chaplaincy team are here for all faiths as well of those of no faith and can advise and support you with this. The hospital chaplaincy team can also conduct a naming and/ or blessing ceremony for your baby if desired.
It can be possible to see your baby after a post mortem but you may need to take some advice regarding their appearance. Some smaller babies can deteriorate quite quickly and it may be advisable to see them before examination rather than afterwards. One of the bereavement support team or midwives can offer you guidance with this decision.
Some parents decide to take their baby home before the funeral. There is no legal reason why you should not do this unless the Coroner has ordered a post mortem.
How long can I keep my baby at home?
This depends on your baby’s condition and the temperature of the room in which he or she will be kept. However a recommendation would be three days.
If you have agreed to a hospital post mortem you can still take your baby home but you will be asked to bring him or her back to the hospital after about 24 hours. This is because the sooner the post mortem is done, the more chance there is of finding out why your baby died.
If you want to take your baby home please let the midwife or bereavement midwife know.
If you decide to take your baby home you will be asked to sign a form confirming that you are taking responsibility for your baby whilst at home and that you will either bring him or her back to the hospital for the funeral or arrange the funeral yourself.
We have a limited number of portable cooling systems available for parents to borrow.
You will be given advice on how to keep your baby cool and told about changes that may occur in your baby’s appearance, such as darkening of the lips. You will be advised that your baby’s skin may be fragile and in this case, when holding your baby, it may be best to place him or her on a pillow and hold the pillow.
You may want to consider these changes when deciding how long to have your baby at home.
The funeral can be religious or non-religious, traditional, or a ceremony of your own design. Take your time to think about how you would like to say goodbye to your baby and what would be right for you. There are different options open to you which are explained below.
The bereavement support officers can arrange for your baby to be cremated or buried locally. The arrangements will be made via a local funeral director on your behalf. There is no charge for the funeral.
If you decide on a cremation the ashes can be returned to you, or buried in the crematorium’s baby garden of remembrance. Your baby’s funeral service can be led by your own minister/faith leader if you have one, the hospital chaplain or a civil celebrant or you can have a simple committal with no service. The hospital can arrange a shared cremation service in which several babies are cremated together in one coffin. There would be no individual ashes: all of the ashes would be buried together in the baby garden of remembrance at the crematorium.
You may wish to arrange your own service for your baby, especially if you wish to have your baby buried. Funeral directors can advise and help you to arrange the funeral. Most funeral directors don’t charge for their services, however there may be some unavoidable cost which your chosen funeral director will be able to discuss with you in more detail.
You may decide that you would like to bury your baby at home, and this is something that can be discussed in more detail with the bereavement support team. We would recommend giving careful consideration to the location.
Each year the hospital chaplaincy team, in conjunction with North Devon SANDS organise a memorial event to provide formal opportunity to remember all babies who have died. This is held locally in December and all bereaved parents and members of staff are welcome to attend.
The hospital chaplaincy team also keep a book of remembrance. If you wish, you can add your baby’s name into the book together with significant words of your choosing.
For further information on the memorial events held or the Book of Remembrance, please contact the chaplaincy team on 01271 322362 or email rduh.chaplaincy-northern@nhs. net
There is a National event every year to remember babies lost during pregnancy and within the early neonatal period. This is during the week of 9th October to 15th October annually. During this week RDUH will be holding a tying of the ribbon event at each site to show our love, support and remembrance of all babies’ lives gone too soon.
If you would like to attend, the exact date and times can be obtained on the RDUH website or by contacting the Specialist Bereavement Midwife on: rduh.bereavementmidwives@nhs. net or Tel: 07741 386665.
Women’s health counsellors are part of the team providing care in the Ladywell Unit. They offer emotional support for women and their partners accessing the services of Maternity and Gynaecology.
They are a small team and so they have very specific referral criteria which reflect the limits of their resource. They have a waiting list.
If you are unsure about whether or not you would appreciate some counselling following the death of your baby this is quite normal. Often people need some time to deal with their immediate feelings of loss before they can make a decision to see a counsellor.
Some people only want to speak to their immediate family and friends; others may wish to speak to someone from their faith or community group. Everyone is different.
If you do want to speak to a counsellor please contact the service within four months of your discharge from hospital. This does not mean that the counsellors won’t meet with you beyond four months but just that you need to let them know by four months that you would like to be seen. Please be aware that if you have a few weeks waiting that this does not indicate that your request is not important.
Telephone: 01271 322722
Email: rduh.ladywellcounselling@nhs.net
You can also contact your GP for advice on counselling especially for other family members such as siblings or grandparents.
Maternity and Neonatal Independent Senior Advocate (MNISA)
The Maternity and Neonatal Independent Senior Advocate (MNISA) is a pilot role designed to support women, birthing people, and families to be listened to and heard after an adverse outcome during their maternity and/or neonatal care. MNISAs focus on supporting women, birthing people, and families to navigate through complexity, to help them find resolution to their concerns and open up doorways, where appropriate, for further action or response.
If you would like to self-refer to our MNISA, you can contact Susan Smith via email at: s.smith212@nhs.net
Where to find further support
SANDS (Stillbirth and Neonatal Death charity)
Helpline: 0808 164 3332
Email: helpline@sands.org.uk | www.sands.org.uk
Child Bereavement UK
Support line: 0800 028 8840
Email: helpline@childbereavementuk.org www.childbereavementuk.org
Child Death Helpline
Helpline: 0800 282 986
Email: use the form on their website www.childdeathhelpline.org.uk
Tommy’s
Helpline: 0800 014 7800
Email: midwife@tommys.org | www.tommys.org
Twins Trust Bereavement Service
Part of the Twins and Multiple Births Association. Support for families who have lost one or more children from a multiple birth.
Helpline: 0800 138 0509
Email: use the form on their website www.twinstrust.org/bereavement.html
Cruse Bereavement Care
Helpline: 0808 808 1677
Email: devon@cruse.org.uk | www.cruse.org.uk
The Samaritans
Helpline: 116 123
Email: jo@samaritans.org | www.samaritans.org
Winston’s Wish (the charity for bereaved children)
Helpline: 08088 020 021
Email: ask@winstonswish.org | www.winstonswish.org
Child Funeral Charity
Provides help with funeral costs. Takes referrals from professionals who have knowledge of the bereaved family and their circumstances.
Tel: 01480 276088
Email: enquiries@childfuneralcharity.org.uk www.childfuneralcharity.org.uk
Petals
Counselling for trauma or loss during pregnancy and birth.
Helpline: 0300 688 0068
Email: counselling@petalscharity.org | www.petalscharity.org
Bereavement Advice Centre
Practical information and advice on what needs to be done when someone has died. You will be able to find answers to less common questions such as taking ashes abroad.
Helpline: 0800 634 9494
Email: info@bereavementadvice.org www.bereavementadvice.org
Free site where you can register online to stop or reduce baby related mailings of samples, advertisements etc.
Tel: 0207 291 3310
Email: mps@dma.org.uk | www.mpsonline.org.uk/bmpsr
Funeral Payment from the Social Fund
• Available if you are claiming benefits due to low income.
• You can claim at any time up to three months after the funeral.
Online: www.gov.uk/funeral-payments (Download and fill in form SF200 and take it to your local Jobcentre Plus)
Tel: 0800 151 2012 (Mon – Fri, 8am – 6pm)
Practical and emotional support for anyone who has been bereaved.
Email: hello@thegoodgrieftrust.org www.thegoodgrieftrust.org
Reference: Royal Devon and Exeter Maternity Bereavement Book
Publication Date: March 2025
Review Date: March 2027
Bereavement Office
North Devon District Hospital
Raleigh Park,
Barnstaple EX31 4JB
01271 322404
Mon – Fri, 9am – 4pm
Counselling Service
Ladywell Unit
North Devon District Hospital
Raleigh Park,
Barnstaple EX31 4JB
01271 322722
Hospital Chaplaincy
North Devon District Hospital
Raleigh Park, Barnstaple EX31 4JB
01271 322362
Central Delivery Suite
North Devon District
Hospital
Raleigh Park, Barnstaple EX31 4JB
01271 322605
Registrar for Births, Deaths and Marriages
0345 155 1002
