East Sussex Healthcare
NHS Trust
Information to help you following the loss of your baby For more information please contact the Bereavement Office Conquest Hospital Tel: 0300 1314500 extension 734892
Bereavement Specialist Midwives Jane Bedford-Clark / Kirsty Milward Maternity Support Worker Angela Riley Maternity Bereavement mob: 07919175438 esht.bereavement-maternity@nhs.net
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 again, and although we wish it could have stayed We are so thankful to have seen it at all.
Anon
Contents Introduction......................................................................................................................................................................................................................... 1 Practical advice on what happens once it is confirmed your baby has died............................................................................................................................................................................................... 2 Returning to hospital...................................................................................................................................................................................... 3 Creating memories............................................................................................................................................................................................... 5 Registration birth / death...................................................................................................................................................................... 8 Post-mortem examination.................................................................................................................................................................. 10 Funeral options............................................................................................................................................................................................................. 12 Taking baby home................................................................................................................................................................................................. 13 Leaving hospital.......................................................................................................................................................................................................... 13 Where to find further information / support organisations..................................... 15 Local contact numbers................................................................................................................................................................................ 17
Introduction We would like to express our condolences to you, your family and friends during this very sad time. The loss of a baby is a very distressing and painful time and we would like to support you through the early days of your bereavement. At this time you may find it difficult to take in the many things that are said to you and therefore we hope this booklet will go a small way to helping you. Even at the most difficult times there are certain things that have to be dealt with and this booklet aims to provide support and advise you with some of the practical and official decisions that you will need to make. We would like to reassure you that you will be given time and support to make these decisions and to spend valuable time with your baby. Every parents experience is individual and every circumstance is different but the loss 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 has passed away. You may find it hard to take in what has happened, to understand why it has happened and to remember what people are saying. Many bereaved parents have physical reactions to grief. You may have palpitations, chest pains, lump in your throat or butterflies in your stomach. You may not feel like eating and you will feel exhausted but find it difficult to sleep. You will be physically, as well as emotionally drained. All of these reactions are common and normal when you experience the loss of a baby.
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The following is practical advice on what happens once it is confirmed your baby has died If you are attending an antenatal clinic within East Sussex Healthcare Trust and there are concerns regarding your baby’s heartbeat, you will be asked to attend the Conquest Hospital in Hastings. Initially you will be seen by a midwife who will ask a doctor to confirm their findings of no heartbeat. This will be confirmed by an ultrasound scan and a second doctor or sonographer is required for confirmation. After condolences and time has been given to understand what has happened the next stage will be discussed with you by the doctor / midwife / Bereavement team. The plan would be for you to have some tablets called Mifepristone by mouth which help and prepare your cervix for you to go into labour. After the tablets have been given you would be advised to go home and if labour doesn’t start within 48 hours you will be advised to return to Buchanan Delivery Suite at the Conquest hospital to start the next steps. After the initial tablets have been taken you need to wait for 20-30 minutes on the ward before you go home to ensure you have no reaction to the medication. During this time the team may take some bloods from you. The bloods are part of the screening which we undertake to try and find a reason as to why your baby may have died. Although going home may seem distressing to you at the time, it does give your cervix the opportunity to prepare for labour and it can make the next steps slightly easier. It also gives you and your partner a chance to think about what has happened. It also gives you the opportunity to organise a support network for you both after your baby is born. To prepare clothes, blankets or toys for your baby and any questions that you may have. During this time, any questions you may have, it is advisable to write these down.
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Whilst you are at home you may experience some period type pains, or signs of labour, discomfort or bleeding. You can call us anytime day or night for advice or for reassurance. Buchanan Delivery Suite number is at the back of the booklet. During this time you can take pain relief to ease discomfort. Returning to hospital On returning to the Buchanan Delivery Suite either on the planned date or before, you will need to bring an overnight bag for yourself and your support person and if you wish clothes/blankets/toy for baby. If you do not have suitable clothes for baby, we can provide this for you. With early baby loss their skin is very fragile and it is better to wrap in a blanket or we can provide an angel pocket rather than clothes. A midwife will care for you during your stay in hospital but if you are in for a couple of days you may see several midwives and bereavement team. They will care for you and support you and your family through this sad journey and will give you time to ask questions and make decisions at your own pace. The midwife will ask you if you have any specific thoughts. These may include name for your baby, any decisions regarding funerals, pain relief when you are in labour and anything else you have thought about. Please share your thoughts with the team and they will endeavour to follow your wishes. If you are unsure that is understandable and wishes can be discussed throughout your stay but you can also change your mind as nothing is set in stone. If you share your thoughts before you are in labour this can help us to guide you with your choices because when you are in pain or discomfort you may not want to talk about important aspects of care for you and your baby.
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Some parents find it helpful to write questions or wishes down as there is so much to take in and understand. Following these discussions further tablets are required to initiate labour. These tablets can be taken orally or inserted into your vagina by a midwife or doctor. The amount of tablets and the route they are taken vary depending on how many weeks pregnant you are but the midwife caring for you will discuss this with you before the first ones are given. Your waters can break during labour or stay complete until the baby is born. You may experience a small amount of bleeding and as labour progresses you may feel pressure in your bottom. This is normal and may indicate that your baby is ready to be born and the midwife will reassure and guide you if these signs happen. You have access to all pain relief when you return for the second part of the induction. It may be better to start with oral tablets and then build up to injections then onto either morphine based patient controlled pain relief or an epidural. The last 2 are provided by an anaesthetist and these are usually when labour has advanced. Please discuss your requests with the midwife caring for you and they can explain in more detail and be aware of your requests. Once your baby has been born it is your choice as to whether you/ your partner wish to see the baby and/or hold them either straight away or wait for a while. Even when decisions were made earlier these can be changed as once baby is with you, you may feel differently about the original choices you made. It is better to see your baby as soon after they are born as possible as their skin becomes fragile and their colour begins to change. Once the birth is complete you and your partner can be left to spend private time together as a family and to start creating your memories.
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Creating memories The midwife caring for you in labour will be aware of your distress and appreciate you may feel that you do not want any physical memories of your baby, it has been found that parents are pleased to have these later. Experience from other bereaved families have confirmed you may not necessarily want these at this time, but, for future they were invaluable. Keeping mementoes can help the grieving process and below are some of the mementoes that we can provide. Snowdrop Suite This a special room for you and your loved ones to create long lasting memories of your baby. The room is available for use when you are medically ready to go home to enable you to create memories as a family. Special memory box A special memory box will be given to you by your midwife which has been made by bereaved parents and these boxes are donated by the charity 4Louis / SANDS. The box has additional ideas for you to create further memories if you wish. You can decline all mementoes if you wish but feedback from bereaved parents tells us that they are pleased they have accepted them. Photographs Your baby can be photographed in your own blankets / clothes / hat or we can provide these if you prefer. Photographs of you and your baby as well as your family can be taken and this can be done with our camera. You can take additional photographs with your own camera and you can be supported to do this. Experience from other bereaved families have confirmed you may not necessarily want these at this time, but, for future they were invaluable. If you do not want the photos at this time they will be stored on the medical illustration database. This will be available for you at any time in the future. ‘I decided that it would be better to have a photo I might never look at than want a photo that I do not have’ Dad 5
Hand and foot prints We take ink hand and foot prints of the baby. There is clay available in the memory boxes should you wish to have this memento. We also provide a lock of hair if your baby has hair, name bands and a cot card with your baby’s weight and time of birth. We have a cuddle cot which is set up in your room and this enables you to spend as much time as you wish with your baby. We can provide cooling plates to enable you to take your baby home. Please discuss this with the midwife who is caring for you. Naming or blessing of your baby Naming can be very important, even for very small babies. Choosing a name is one way of doing something positive for your baby and it helps to give focus and identity to thoughts and feelings about your baby. Some people find it helpful to have a brief ceremony and you can organise for someone to do this for you or the hospital chaplain can support you with this. This can be religious or non-religious as you wish. We will not be able to tell you the sex of very tiny baby but you may want to choose a name suitable for either sex. Annual Remembrance This service is held annually in October and it takes place in the Chapel at the Conquest Hospital. At this service you can light a candle in memory of your baby. The dates are announced in the local press, radio and outside the Chapel on level 2 at Conquest Hospital.
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Book of Remembrance The remembrance book is kept in the Chapel and there is one at Eastbourne and Conquest. You are able to visit the Chapel at any time to look at the book and for your particular entry this can be organised with the Chaplain. The book will be open on your page when it is your baby’s anniversary. Once your entry has been printed in the book a copy will be sent to you for your mementoes. Teardrop sticker SANDS refer to a pregnancy after loss as a Rainbow pregnancy. A teardrop sticker will be placed on your Pregnancy Passport (which would have been given to you at booking) to highlight to professionals caring for you that you have previously had a baby loss. As your maternity notes are electronically kept this will enable professionals to check information online to help prevent you repeating your pregnancy loss journey.
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Registration birth / death In England and Wales all births, stillbirths and deaths are required by law to be registered by the Registrar of births and Deaths. If your baby was born sleeping (stillbirth) after the 24th week of pregnancy a Stillbirth certificate will be issued to the Registrars office electronically to enable registration and funeral arrangements to be formalised. If your baby was born alive and then died (neonatal death) a Neonatal Death Certificate will be issued to the Registrars office to enable registration and funeral arrangements to be formalised. There is no legal requirement to register your baby if he / she were not born alive before the 24th week of pregnancy. There is a certificate within your memory box which will be completed by the midwife/support worker who will be caring for you. If you would like to complete this yourself then please let us know. The Registrar will ask for: • The mother’s name, occupation, date and place of birth and any other names that the mother might have used, including maiden name if applicable. • The father’s name, occupation, date and place of birth and any other names the father may have used. • The date of your baby’s birth. The Registrar will enter your baby’s name in a stillbirth register. You can have your baby’s first name (s) entered if you wish as well as the surname, so you may want to give thought to names for your baby before registering. The mother or father may register their stillborn baby alone when they are married to each other. Parents who are not married to each other have to see the Registrar together if they want to have the father’s name entered in the stillbirth register.
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Please ring the registry office to book an appointment, • Hastings registration Office Town Hall Queens Road Hastings TN34 1QR Opening hours Monday – Friday 9.00am to 5.00pm Telephone 0345 60 80 198 • Eastbourne Registration Office Town Hall Grove Road Eastbourne BN21 4UG Opening hours Monday – Friday 9.00 to 5.00pm. Telephone 0345 60 80 198
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Post-mortem examination A post-mortem examination may be helpful in identifying why your baby has died. Although a post-mortem does not always find a definite cause it may eliminate specific reasons/conditions that did not cause it. They are helpful with antenatal diagnosis such as abnormalities in addition to planning future pregnancies. You will be given a Sands booklet ‘Deciding on Post-mortem examination information for parents’. This booklet contains a lot of helpful information and will assist you when making your decision. There is also information on the SANDS website / app. Some parents are certain from the beginning that they would like a post-mortem, others may not be sure. It is your decision and your consent is required for a post-mortem, unless a Coroner is involved in your case. A post mortem trained person will discuss your wishes and the form with you before you give consent. A copy of the signed paperwork will be given to you for your records. Once you have made the decision for the examination you will be given 48 hours in which you can change your mind. There may be specific questions you would like to ask such as, When it might be carried out? • Usually this is done within a couple of weeks but this can vary if over holiday periods. Where will the post-mortem be undertaken? • The examination is undertaken at Great Ormond Street Hospital, (GOSH), London. The examination will be carried out with care and in a sensitive manner and in most cases you will be able to see and hold your baby again before your planned funeral.
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If you do not want a post-mortem then you could consider a skin sample from baby depending on how old the baby is. This sample is sent to Guys and St Thomas’ in London for testing. If you would like information regarding this test please speak to the doctor / Maternity Bereavement Team / Midwife caring for you when you are in hospital and they can explain further. How long will I wait for the results and how will I receive them? • You can wait up to 12 weeks for the results. The results will be shared when you have your Debrief appointment with the Consultant at the hospital. Once all results are available you will receive a letter informing you of a date and time for this appointment. This will enable you to ask any questions and make any plans for future pregnancies. • The bereavement midwife or a senior midwife will be at that appointment to support you and assist with any questions that you may want to discuss.
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Funeral options Under 24 weeks in your pregnancy you can choose a Chaplaincy Cremation. You have the choice of attending this service or not and is provided by East Sussex Healthcare. The Chaplain will contact you before the service to confirm if you would like to attend. There may be other parents attending this service. All of these services will be held at Hastings crematorium. If you would like ashes from baby then the advice is to have an Individual Cremation and to approach a Funeral Directors of your choice. Another choice available to you is an Individual Cremation. You are required to approach a Funeral Director of your choice for them to act on your behalf. We have a list of names that may assist you with your decision. Your wishes for the funeral can be discussed with the Funeral Director and your involvement in organising the funeral can be as little or as much as you wish. Over 24 weeks you have a choice of an Individual Cremation or Burial and you are required to contact Funeral Directors to organise. The costs are usually covered but depending on your wishes there may be an additional cost. The Funeral Director will be able to advise you. If you are undecided about your funeral choice or any other decisions which you may have made whilst you were in hospital these can be discussed with the bereavement team when they contact you. The maternity bereavement team will contact you when you have been discharged from hospital to provide support and guidance with ongoing care. Community midwife will also be available to provide support and guidance.
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Taking baby home Some parents decide to take their baby home before the funeral. There is no reason why you should not do this unless the Coroner has requested a post-mortem. If this is your wish please discuss with the midwife caring for you or the maternity bereavement team and we will support you and your family in creating these memories. Following the birth of your baby, you will continue to bleed like a normal period up to 6 weeks post natal. If this becomes heavier than normal for you or offensive then please inform your midwife or GP. You will be offered medication to assist with the drying up of your breast milk. Bereaved mums through the SANDS support group have given their opinions regarding the medication. They were, the medication was helpful and this natural process was less distressing when you are already grieving for your baby. Leaving Hospital The midwifery staff will inform your Community Midwife (CMW), General Practitioner (GP) and Health Visitor (HV) about the loss of your baby and cancel antenatal appointments and scans that are already booked. Following discharge from hospital a community midwife will contact you the next day to provide ongoing care and to organise any subsequent visits or telephone calls. This is individualised to your needs and initially you may feel this is not necessary but there is the option to change your mind and you can access ongoing support at any time. In addition to this a member of the maternity bereavement team will contact you to provide ongoing bereavement support and guidance through the grieving process.
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If your baby has sadly died after being born, this is a neonatal death and your baby requires registration with the Registrar of Births, Deaths and Marriages. There are other agencies who will contact you to provide support. Your perspectives of the care you and your baby have received is very important to us. You can opt out of this if you wish but it is an opportunity for you to share any concerns or areas of good care, which you received, to enable us to improve our service and give feedback to staff where applicable. Everyone deals with bereavement differently and there are no time limits on these emotions. It is unlikely both parents will be in the same emotional place at the same time. There is no right or wrong way to feel. Everyone is an individual and will deal with grief in their own way. People feel what they feel and it may help to talk to other people, friends, family or professionals. Hastings and East Sussex Sands Support Group provide support for bereaved parents. The group is run by parents who have lost babies themselves and therefore are aware of the range of emotions and feelings you are possibly going through. They meet the last Thursday of every month at the venues below 7.30pm – 9.30pm. Venue: HMBYC Rock a Nore Road Hastings East Sussex TN34 3DW Email: hastingseastsussexsands@gmail.com Telephone Number: 07493 716124 Eastbourne Unit 4, Beverly Business Park, 6 Finmere Road Eastbourne BN22 8QG Your GP can also help you and there is a list of organisations and their contact details at the back of the booklet. 14
ORGANISATION AND CONTACT DETAILS INFORMATION Child Bereavement UK Tel: 0800 02 888 40 Email: support@childbereavementuk.org Website: www.childbereavementuk.org Child Bereavement UK is a national organisation that supports families when a baby or child of any age dies or is dying, or when a child is facing bereavement.
Cruse Bereavement Care – Hopeagain National Helpline 0808 808 1677 Email: hopeagain@cruse.org.uk Website: www.hopeagain.org.uk Hopeagain is a website developed by Cruse Bereavement Care’s Youth Involvement Project which aims to support young people after the death of someone close to them.
The Child Death Helpline Tel: 0800 282986 Website: www.childdeathhelpline.org.uk Freephone confidential helpline open every day of the year for anyone affected by the death of a child.
Dragonflies Children and Young People Bereavement Project St Nicholas Centre, 66 London Road, St Leonards on Sea, East Sussex, TN37 6AS Tel: 01424 423683
The Compassionate Friends (TCF) National Helpline: 0345 123 2304 Available for support and information daily from 10.00am - 4.00pm and 7:00pm - 10.00pm. The line is always answered by a bereaved parent Email: helpline@tcf.org.uk Website: www.tcf.org.uk TCF is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of those who have suffered the death of a child/children.
Grief Encounter Project Tel: 0208 371 8455 Helpline number freephone 08088020111 Monday –Friday 9am-9pm. Website: www.griefencounter.org.uk Offers support and information to bereaved children and families. A registered charity providing support and information for anyone affected by pregnancy loss. Miscarriage Association 17 Wentworth Terrace, Wakefield, WF1 3QW Telephone Helpline 01924 200799 Monday to Friday 9.00am – 4.00pm Email: info@miscarriageassociation.org.uk Website: www.miscarriageassociation.org.uk
Cruse Bereavement Care Hastings and Rother area Tel: 01323 642942 Email: cruse@cruseeastsussex.org.uk Website: www.cruse.org.uk Offers one-to-one counselling, information, publications, and support for children who have been bereaved. See also info below under National Organisations for Cruse Hopeagain.
Muslim Youth Helpline (MYH) Freephone from all UK landlines 0808 808 2008 Email: help@myh.org.uk Website: www.myh.org.uk Helpline and Web Chat Hours. Monday – Sunday 4pm – 10pm
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Partnership for Children Good mental health for children, helping your child cope with bereavement 0208 974 6004 Website: www.partnershipforchildren.org.uk Website promoting good mental health for children – for life. Programmes and resources to help young children around the world to communicate effectively, to cope with their anxieties and difficulties, and to develop skills for life.
Winston’s Wish National Helpline: 08088 020 021 Email: info@winstonswish.org.uk Website: www.winstonswish.org.uk Charity offering practical support and guidance to bereaved children, their families and professionals.
SANDS (Stillbirth and Neonatal Death Charity) National Helpline: 0808 164 3332 Email: helpline@uk-sands.org Telephone enquiries: 020 7436 7940 / 020 3897 6094 or Email: support@uk-sands.org Website: www.uk-sands.org or www.why17.org SANDS is an organisation that can offer you practical help or emotional support when your baby has died before, during or shortly after birth. The helpline team are there to listen and give support. They can advise you about finding local help, whether from a SANDS group or other counselling services, and have information about other relevant support organisations.
to you in your loss. We
The organisations listed in this booklet may be of some help
apologise for any address or telephone number changes which may occur after printing and any changes to services thereafter.
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Local contact numbers Maternity Bereavement Team Maternity Bereavement Team Bereavement Office Chaplaincy Office Pals Complaints palsh@nhs.net / palse@nhs.net
0791975438 0300 1314500 ex 734892 0300 1314500 ask for Chaplaincy 0300 1314500 ex 735309 / 772350
Hastings & St Leonards Registrar of Births and Deaths Monday – Friday 9.00am to 5.00pm Tel: 0345 60 80 198 Eastbourne Registrar of Births and Deaths Monday – Friday 9.00am to 5.00pm Tel: 0345 60 80 198 Please telephone Registry for an appointment register your baby.
A tiny flower lent not given to bud on earth and bloom in heaven.
Reference: Conquest Hospital Maternity Bereavement Booklet Publication Date: June 2023 Review Date: June 2025
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