A practical guide for parents Following the loss of
Royal Devon UniversityNHSHealthcareFoundationTrust NHS
your baby
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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 Your NHS Foundation Trust
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 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 01392 402349 or 01392 406522. Our office hours are Monday to Friday, 9am to 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.
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Possible Cause Of Pregnancy Loss 3 Management Of Pregnancy Loss 4 End of Pregnancy, Decisions For Fetal Anomalies 5 Stillbirth/Neonatal Death 6 Post Mortem Examination 8 Hospital Post Mortem 9 Coroner’s Post Mortem 12 Registration 13 Registering Your Baby’s Death - Stillbirth 13 Registering Your Baby’s Death - Neonatal Death 15 Financial Support And Time Off Work 17 Keepsakes 20 Seeing Your Baby 21 Taking Your Baby Home 22 Funeral Arrangements 24 Hospital Arranged Cremation 24 Privately Arranged Service 25 Memorial Service 26 Counselling Service 27 Where To Find Further Support 29 Useful Telephone Numbers 32 Book of Remembrance Form 34 Your NHS Foundation Trust 2 Contents Page
AStructuralweakcervix or one that dilates too soon can lead to late
Possible Causes Of Pregnancy Loss
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.
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ThisInfectionsmiscarriage.isquite 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.
RareOthersstructural 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
Management Of Pregnancy Loss Medical Management (taking medicines)
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.
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.
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End Of Pregnancy, Decision For Fetal Anomalies 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 Throughoutpregnancy.thistimeand 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
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There are different ways to end a pregnancy. This can be done either through expectant management or medical termination.
All relevant options are discussed with parents and the choice is very individual. Staff who are caring for parents understand how making the decisions and going through the process can be very upsetting.
Stillbirth (a baby born after 24 weeks showing no signs of life) Neonatal Death (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.
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about various issues such as how the pregnancy is ended, making memories of their baby and further investigations.
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 any 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.
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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.
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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 team on the numbers given at the back of this booklet. Before you leave the hospital you will be given some ‘Stillbirth and Neonatal Death’ charity (SANDS) bereavement booklets which contain lots of helpful information. One booklet in particular is the SANDS guide ‘Deciding about a post mortem examination – information for parents’. 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.
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Post Mortem Examination
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The doctor 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.
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.
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.
Hospital Post Mortem
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The post mortem will take place at a specialist hospital; usually within 1 week. Your baby will be transferred to the specialist hospital by our contract funeral directors and will be returned to The Royal Devon and Exeter 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 between 1-3 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.
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The results can take about 16 weeks depending on the type of examination you requested and consented to.
Once the post mortem results are available (this can be up to 16 weeks after the examination), 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 for any unexpected loss a sample of placenta is taken and sent to the Kennedy Galton Centre for Genetic Research 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 team will be happy to answer these for you.
Coroner’s Post Mortem
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.
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Registration 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. 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 you will need the Medical Certificate of Stillbirth issued by the doctor or midwife caring for you. The Bereavement Team will ensure this is taken to the Registrar’s Office who will then call you to make an appointment for you. You will be able to register anywhere in Devon excluding Plymouth or Torbay.
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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.
The Registrar will also give you a white form to permit burial or cremation. You should give this to the funeral director. If you have not yet chosen a name for your baby but wish to add one after registration, this will be possible but please keep in mind that the name you choose to add will be entered into section 17 of the Certificate of Stillbirth and not in to the ‘Forename’ section. You will need to make an appointment with the Registry Office to make any additions to the certificate and there may be a charge for this. The Registrar’s Office can be contacted on 0345 155 1002. 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
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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 Bereavement Office will ensure that a Medical Certificate of Cause of Death is issued by the hospital doctor and is taken to the Registrar’s Office 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, most parents will choose to do so, however you have 42 days in which to register the birth. 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 fee for this. A small charge is made by the Registrar’s Office for the Death Certificates.
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The Registrar will also give you a green form to permit burial or cremation. You should give this to the funeral director. If you have not yet chosen a name for your baby but wish to add one after registration, this will be possible but please keep in mind that the name you choose to add will be entered into section 17 of the Certificate of Stillbirth and not in to the ‘Forename’ section. You will need to make an appointment with the Registry Office to make any additions to the certificate and there may be a charge for this. The Registrar’s Office can be contacted on 0345 155 1002. 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
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. Babies under 24 weeks Unfortunately, as your baby died before 24 completed weeks of pregnancy (known as a late miscarriage), 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.
Financial Support And Taking Time Off Work
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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 Center 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. 18 Your NHS Foundation Trust
Here to help... 19 Babies over 24 weeks 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 or check your contract of employment You may be asked for evidence to get financial support. This would be the certified certificate from the Registrars. You are still entitled to free prescriptions and NHS dental treatment for at least 12 months. Ask your Midwife for form FW8, which you fill in and they sign and send off for you. For Neonatal Deaths 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.
Keepsakes Keeping mementos of your baby can help the grieving process. If you would like to make a memory box the Maternity or Neonatal 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 • Candles • Essential oils • Key rings You will also be offered a memory box on the maternity unit. 20 Your NHS Foundation Trust
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Seeing Your Baby 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 maternity unit 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. Maternity have a selection of hand knitted clothing for smaller babies. If there are any religious or cultural practices that you want to carry out for your baby please tell us and we will help you to ensure that everything is done as you wish. There are representatives from multiple denominations including Humanists available through the hospital chaplaincy to help and support you with this. The hospital chaplains are also able to conduct a blessing or naming ceremony for your baby if desired.
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 3 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. Your
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 team or midwives will always be happy to advise you if you feel that you need some guidance.
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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.
Taking Your Baby Home
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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.
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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 from Women’s Health.
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Funeral Arrangements
Hospital Arranged Cremation
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 Royal Devon & Exeter Hospital can arrange for your baby to be cremated at East Devon Crematorium. This would be a non-attended service with other babies. Each baby will have its own casket. The ashes will be scattered in the Children’s Garden at the Higher Cemetery with a representative of either the Chaplaincy, Bereavement or Midwifery in attendance.
If you choose a burial for your baby or an internment of their ashes and wish to place a headstone or memorial on the grave, you will have to purchase the ‘Grant of Exclusive Right’ to a grave. There will be a fee payable for this, again the Funeral Director will be able to discuss this with you and provide you with more information, or you can contact the cemetery directly. 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 Team. We would recommend giving careful consideration to the location.
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Privately Arranged Service
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.
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Each year the Hospital Chaplaincy Team organise and lead a memorial service for all babies who have died. A candle is lit for each baby and there is time for quiet reflection and remembrance. This is usually held on a Sunday in March at at the Royal Devon and Exeter Hospital Chapel and all bereaved parents are welcome to attend. You can find out more by contacting the Chaplains on 01392 402024. There is also a book of remembrance in the Maternity Unit at the hospital. You can have your baby’s name entered in to it if you wish. If you would like your baby’s details entered into the book of remembrance, there is a simple form at the back of this booklet. Please complete the form and return it to the address on the form, there is no time limit on completion of this.
Counselling Service
They are a small team and so they have very specific referral criteria which reflect the limits of their resource. They often have a short 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.
Women’s Health Counsellors are part of the team providing care in The Centre for Women’s Health. They offer emotional support for women accessing the services of Maternity and Gynaecology and for parents with babies on the Neonatal Unit.
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There is a confidential answer phone on the Centre for Women’s Health Counselling Service direct line and someone will phone you back as soon as they are able. The referral criteria for the service can be viewed at: obstetrics-birth-and-babies/postnatalwww.rdehospital.nhs.uk/services/maternity-andYou can also contact your GP for advice on counselling especially for other family members such as siblings or Grandparents.
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 4 months of your discharge from hospital. This does not mean that the counsellors won’t meet with you beyond 4 months but just that you need to let them know by 4 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: 01392 406678 Email: tr.cwhcounsellors@nhs.net
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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: www.childbereavementuk.orgsupport@childbereavementuk.org Child Death Helpline Helpline: 0800 282 986 Email: www.childdeathhelpline.org.ukcontact@childdeathhelpline.org Tommy’s Helpline: 0800 014 7800 Email: midwife@tommys.org | www.tommys.org TAMBA Bereavement Support Group 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 29
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: info@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: www.childfuneralcharity.org.ukenquiries@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: www.bereavementadvice.orginfo@bereavementadvice.org 30
The Money Advice Service Helpline: 0800 138 www.moneyadviceservice.org.uk7777 | www.gov.uk Baby Mailing Preference Service (MPS) Free site where you can register online to stop or reduce baby related mailings of samples, advertisements etc. Tel: 0207 291 3310 Email: bmps@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. England, Scotland and Wales Online: www.gov.uk/funeral-payments (Download and fill in form SF200 and take it to your local Jobcentre Plus) Tel: 0800 731 0469 (Mon to Fri, 8am to 6pm) Good Grief Trust Practical and emotional support for anyone who has been www.thegoodgrieftrust.orgbereaved. 31
32 Bereavement Office Royal Devon and Exeter Hospital Barrack Road,Exeter 01392 Mon-Fri4023499amto 4pm Counselling Service Centre for Women’s Health Royal Devon and Exeter Hospital Barrack Road, Exeter 01392 406678 Hospital Chaplaincy Royal Devon and Exeter Hospital Barrack Road, Exeter 01392 402024 Labour Ward Royal Devon and Exeter Hospital Barrack Road, Exeter 01392 406650 or 406651 Neonatal Unit Royal Devon and Exeter Hospital Barrack Road Exeter 01392 406623 Registrar for Births, Deaths and Marriages 0345 155 1002 Useful Telephone Numbers
33 Notes ...................................................................................................................................................................................... ...................................................................................................................................................................................... ...................................................................................................................................................................................... ...................................................................................................................................................................................... ...................................................................................................................................................................................... ...................................................................................................................................................................................... Reference: Royal Devon and Exeter Maternity Bereavement Book Publication Date: July 2022 Review Date: July 2024
If you would like your baby to be remembered in this book, please complete this form below and write any words you wish to be included and return it to the above address
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A Book of Remembrance is kept at this hospital in which parents can remember babies who died during pregnancy, shortly after delivery, or whilst receiving neonatal care. This is available for viewing on Labour Ward.
If you would like to write a poem or anything else please attach it to this sheet. If you would like to do this in your own handwriting, and/or include a drawing, these can be done on paper up to A4 size. Devon
BereavementLabourMidwivesWard Royal
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and ExeterBarrackHospitalRoadExeterEX25DW Baby’s Name (if ContactName(s)Datenamed)ofBirthofParent(s)telephonenumber Words of remembrance book: Royal Devon UniversityNHSHealthcareFoundationTrust NHS
Published by RNS Publications © Tel: 01253 832400 R0
