Tameside Hospital - A guide for bereaved parents

Tameside and Glossop Integrated Care NHS Foundation Trust

A practical guide for bereaved parents – following stillbirth, neonatal death, second trimester loss and compassionate induction.

The death of a baby is an extremely distressing and painful time. We understand that this is a very difficult time for you, during which you will have been provided with a lot of information and choices you were not expecting. It can be extremely hard to remember all the information you have been given. The information within this booklet aims to provide some support and advice whilst explaining some of the options and services available. If reading this booklet is too difficult right now, we encourage you to hold onto it to look through later. The staff at Tameside & Glossop Hospital wish to take this opportunity to offer our deepest condolences to you and your family.

Pregnancy loss, Stillbirth and Early Neonatal death • • • •

Second trimester pregnancy loss or late miscarriage are terms used to define a pregnancy loss from 13+0 – 23+6 weeks gestation.

Compassionate Induction or Termination of Pregnancy for Fetal Abnormality (TOPFA) Stillbirth – refers to a baby that is born after 24 weeks gestation that did not have signs of life at birth.

Early Neonatal Death – a baby that was born with signs of life at birth that subsequently dies in the first 7 days of life.

Contents Second trimester pregnancy loss................................................1 - Management.........................................................................................................2 - Things you may wish to consider..............................................................3 - Understanding what happened..................................................................4 - Arrangements after birth.................................................................................5

Stillbirth........................................................................................................7

- Things you may wish to consider.............................................................8 - Understanding what happened..................................................................9 - Arrangements after birth................................................................................10 - Review of care.....................................................................................................12

Neonatal Death........................................................................................13

- Things you may wish to consider.............................................................13 - Understanding what happened..................................................................14 - Arrangements after birth................................................................................15 - Review of care.....................................................................................................17

Compassionate Induction – Termination of pregnancy for fetal abnormality (TOPFA).........................................................18

- Things you may wish to consider.............................................................18 - Understanding what happened..................................................................19 - Arrangements after birth................................................................................20

- Under 24 weeks..................................................................................20

- Over 24 weeks.....................................................................................21

Financial support...................................................................................24 Postnatal care information and support..................................24 Emotional wellbeing and grieving...............................................28 Chaplaincy..................................................................................................28 Rememberance........................................................................................29 Other useful contacts or information........................................30

Second trimester pregnancy loss Most miscarriages occur early in pregnancy. It is much less usual to experience pregnancy or baby loss in the 2nd trimester. There will be many questions you have about why this has happened, that unfortunately you may never have the answers to. It is important to know that it is very unlikely to have been caused by something you did or didn’t do.

Possible causes of a second trimester pregnancy loss can include.

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A chromosome or genetic abnormality. This is an abnormality that usually occurs by chance at the point of conception or occasionally can be inherited from a parent. If a chromosome problem is suspected, it might be possible to check this by sending a sample of cord, skin, or placenta.

A structural abnormality of the baby – these are a problem in the baby’s body, for example a heart problem or spina bifida. Sometimes these can be seen on a scan but often only found after a baby is born.

A problem with the womb or cervix – An unusually shaped womb or fibroids can increase the risk. During pregnancy the cervix should stay tightly closed. However some women have risk factors that increase the chance of the cervix opening earlier, causing early birth.

If this has been identified as a cause your consultant will discuss the management of a future pregnancy with you at your follow up debrief appointment. It is important to avoid pregnancy until you have had this appointment.

Infection – there are some infections that can cause a second trimester loss by infecting the baby or the liquid that surrounds the baby (amniotic fluid/liquor) Antiphospholipid syndrome (APS) – this is a condition that can increase blood clotting, which during pregnancy can cause early or late pregnancy loss.

The staff that are caring for you will follow the North West second trimester pregnancy loss pathway which will guide them as to what tests and investigations to offer you. This will help to try and find any answers to what happened and that can support any care plans required in a future pregnancy.

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Management Your labour might have started spontaneously where there was no time to plan and discuss your options and wishes.

If you have increased vaginal bleeding or severe signs of infection/ sepsis, the staff caring for you will recommend immediate induction of labour or other intervention.

In circumstances that do not require urgent intervention, the staff caring for you will give you information about the options available. These are induction of labour or expectant management.

An induction of labour is done in two stages. The first stage a tablet is given orally called Mifepristone. This acts to make the uterus more sensitive to the second stage of induction of labour. After the first stage, you might be offered the option to go home with a planned date to commence the second stage of induction 24-48 hours later.

For the second stage of induction, you will be admitted to the hospital, meet your midwife, and prostaglandin tablets will be given (usually in the vagina) every few hours until the baby is born.

During this time, staff caring for you will ensure that you are comfortable, offered pain relief and supported. You will be able to have up to 2 birth partners stay with you throughout this process.

If you choose expectant management, the staff will arrange for you to attend the hospital twice a week for blood tests and observations. You can change your mind at any time and will be provided with a 24-hour contact number. Longer delays can affect the appearance of your baby at birth and the information gained from any tests after birth.

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Things you may wish to consider When you are planning what to pack for your hospital admission, in addition to your own clothing/nightwear, your birth partner/s can also bring any items they will require. You are very welcome to bring any personal items you have prepared for your baby at home into hospital, such as your own baby blankets, clothing, or soft toys. You may also wish to bring other items such as a letter, keepsakes, photo or story book to read to your baby.

You may have already named or wish to name your baby, and you can let the staff know how you would like them to refer to your baby.

Some families have found it comforting to see and hold their baby following birth. This might not be something you have considered, and you might feel unsure about what to do. There is no right or wrong decision. Seeing your baby allows time for you to say goodbye or to make some precious memories. This could include taking photographs, hand/foot prints or having other visitors to come and meet your baby.

The midwives caring for you will be able to support you in these difficult decisions. There is a selection of very tiny baby items such as angel pockets, blankets, cribs and gowns which can be provided for you to use. The hospital has a ‘cuddle cot’, which is a cold mattress that has been specially designed to allow families to spend longer time with their baby. They are used to slow down the changes in the baby’s body following birth and by doing so provides families with valuable time to make precious memories. The staff will offer you a memory box that can be a special place for keepsakes to remember your baby by. This can include scan pictures, hand and foot prints or other personal items.

A memory box can help you to acknowledge your grief and talk about your baby/pregnancy to friends and family. Staff caring for you can offer to complete a birth certificate for your baby.

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Understanding what happened Depending on the circumstances of your loss, there may be specific investigations that are offered to try and understand what happened.

The staff caring for you will be able to provide you with more details of the options available to you in your circumstance. These can include post mortem examination, specialist examination of the placenta, blood tests and in some circumstances, chromosome analysis.

It can take 6-18 weeks for all the investigations and reports to be available, but the length of time will depend upon which investigations you have consented to. We would recommend avoiding pregnancy until the results are received. The bereavement midwife will be able to provide updates and once the reports are available, you will be invited to attend a debrief appointment with your consultant to discuss these results. It might be useful to write down any specific questions you have ahead of this appointment. It is important to let us know if you move house during this time. If you prefer not to have a face-to-face appointment, a telephone or letter follow up can be arranged. We will check your preference before the appointment.

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Arrangements after birth Following the birth of your baby, you will also have the difficult decision of what you would like to happen to the baby. Under 24 weeks gestation, where a baby has been born with no signs of life, there is no legal requirement to have a cremation or burial. However, there are several options available you may wish to consider. The hospital offers a monthly communal cremation for babies under 24 weeks, which takes place on the last Wednesday of the month at Dukinfield Crematorium. Each baby is placed into their own individual container and cremated respectfully together at Dukinfield Crematorium. Although families are not invited to attend, this remains respectful. Music is played whilst babies are carried to the front of the crematorium. Following the cremation, the ashes are scattered together onto Rose Bed B outside the crematorium, where families can visit and have time there.

Some families prefer to make their own arrangements for their baby.

The hospital does not arrange individual funerals, but you can make these arrangements by contacting a funeral director of your choice.

Some funeral directors will not charge you for this service, however because there is no legal requirement for a funeral under 24 weeks, some will have a charge for their service. We would suggest contacting a few different services to gather as much information before making a final choice you feel comfortable with.

There is no legal reason why you cannot take a baby home from the maternity unit or the bereavement centre (mortuary). Staff caring for you will be able to discuss your options and preferences. Some families decide to take their baby home to bury in the garden or in a planter with flowers or a shrub. It is important to take time to consider your options, thinking carefully about any restrictions at your home (for example if you live in rented property or have plans to move home).

For this reason, a planter would be a more practical option for moving house in these circumstances. For further guidance you can visit www.hta.gov.uk. The local Environmental Health Department of Environmental Agency can be a useful source of advice on this matter.

The staff will complete any relevant documents required to facilitate taking your baby home.

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Any baby not being discharged from labour ward will be transferred to the hospital Bereavement Centre (mortuary) where the bereavement team will care for your baby until arrangements have been made for the funeral director to collect your baby. You can contact the team to arrange a visit during this time on: 0161 922 6059.

The staff will support you if you would like to transfer your baby yourselves to the Bereavement Centre.

You might not be able to decide before being discharged, and staff from the hospital will contact you again to discuss. Your baby will remain at the Bereavement Centre during this time, however, the Human Tissue Authority advise that this time should not exceed 12 weeks. If we have not had any updates after 12 weeks, the hospital will make arrangements for the under 24-week communal cremation.

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Stillbirth Being told your baby has died is devastating. Your baby might have died before labour in the antenatal period or during labour. If your baby died before labour, in the absence of any urgent concerns, it is safer for you to give birth to your baby vaginally.

We understand that you will likely be feeling a range of emotions, and these can make it harder for you to process what’s being said and the decisions being asked of you. It can be very hard to take in all the information that is being given to you at this time and the aim of this information is to help you understand what will happen next and the necessary decisions you’ll need to make. Please do not hesitate to ask the staff caring for you what ever questions are on your mind as we will do our very best to answer them.

The midwives and doctors are here to help and support you in any way they can, and you will be encouraged to be included in all discussions about the management of yours and your baby’s care.

Experienced staff will explain your choices for birth and allow you and your partner time to process these details and give you support in making decisions. For the majority, vaginal birth will be recommended.

We know this can come as a further shock to learn you will have to go through labour. A vaginal birth if possible is safer due to fewer risks to you. The recovery is more straight forward and quicker, and there is less risk of complications in future pregnancies. If you have had a previous caesarean section, a consultant will discuss your choices with you.

There are some urgent circumstances when birth needs to be expedited to benefit the health of the mother and this might mean less opportunities or time for you to develop a birth plan with the team.

When birth is not urgent, your choices for birth are induction of labour or waiting for labour to start (expectant management). You may prefer to go home to discuss and consider your options before making any decisions.

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If you choose to have labour induced, this will be completed in a twostage process. For the first part of the induction of labour, you will be given an oral tablet called Mifepristone which acts to make the uterus more sensitive to the second stage. After taking this tablet, if you are well and do not have any complications, you might be offered the option to go home with a planned date to commence the second part of induction 24-48 hours later.

If you prefer to avoid induction of labour, delaying induction can be an option for a short period but wouldn’t be advised for more then 48 hours. Should you wish to delay any longer than this, it is recommended that you have regular blood tests and check ups twice per week at the hospital to monitor your well-being. It is important to note, longer delays will affect the appearance of your baby at birth and can affect the information gained from any tests following birth.

Things you may wish to consider When you are planning what to pack for your hospital admission in addition to your own clothing/nightwear your birth partner/s can also bring any items they will require. You are welcome to bring any personal items you have prepared for your baby at home into hospital, such as you might want to bring your own baby blankets, Moses’ basket, clothing, or soft toys. You may also wish to bring other items such as a letter, keepsakes, music, photos, or story book to read to your baby.

You might have already named or wish to name your baby. If so, you can let the staff know how you would like them to refer to your baby.

Some families have found it comforting to see and hold their baby following birth. This might not be something you have considered, and you might feel unsure about what to do at the moment. There is no right or wrong decision. Seeing your baby allows time for you to say goodbye or to make some precious memories. This could include taking photographs, hand/foot prints, castings, clay foot prints, or having other visitors come and meet your baby. The midwives caring for you will be able to support you in these difficult decisions.

8

There is a selection of baby items such as blankets, cribs, clothing, and gowns which can be provided for you to use. Bereaved families have donated a ‘cuddle cot’ for you to use. This is equipment that consists of a cold mattress to lay in the cot which has been specially designed to allow families to spend longer time with their baby. Cuddle cots are used to slow down the changes in the baby’s body following birth and by doing so provides families with valuable time to make precious memories. The midwives caring for you will offer you a memory box that can be a special place for keepsakes to remember your baby by.

This can include scan pictures, hand and foot prints or other personal items. A memory box can help you to acknowledge your grief and talk about your baby/pregnancy to friends and family.

Understanding what happened There are specific investigations that may be offered to help try and understand what happened and why your baby died. The staff caring for you will be able to provide you with more details of the options available to you. These can include post mortem examination, specialist examination of the placenta, blood tests and chromosome analysis. Staff will provide you with written post-mortem information to help you make informed decisions. Baby post-mortems are not performed at this hospital, and your baby would be transferred to Manchester Childrens Pathology for a paediatric post-mortem.

It can take 6-18 weeks for all the investigations and reports to be available but the length of time will depend upon which investigations you have consented to. We would recommend avoiding pregnancy until the results are received. The bereavement midwife will be able to provide updates and once the reports are available you will be invited to attend a debrief appointment with your consultant to discuss these results. It might be useful to write down any specific questions you have ahead of this appointment. It is important to let us know if you move house during this time. If you prefer not to have a face-to-face appointment, a telephone or letter follow up can be arranged, we will check your preference before the appointment.

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Arrangements after birth After birth, you will need to register the stillbirth with the local registrar of births and deaths at Dukinfield Town Hall. A midwife will complete a medical certificate of stillbirth which, will be emailed by us to Tameside Registrars to notify them of the birth. The cause of death details will be recorded on here and should be explained to you. Your contact details will be included, and the registrar will contact you to arrange an appointment. If you are married either partner may register the birth. If you are not married, the mother must attend to register the birth and the partner must attend if they would like their name on the certificate.

The registrar will provide you with a certificate that you will need for the burial or cremation.

When a baby dies after the 24th week of pregnancy, it is a legal requirement to have a burial or cremation for your baby, however the decision for a funeral service of any kind is optional. Having a funeral can be an opportunity for parents to say goodbye in the presence of family and friends.

To arrange a burial or cremation with or without a funeral service, you will need to contact a funeral director of your choice. The bereavement midwife can provide some support with this. Most funeral directors will not charge for a standard funeral – which would consist of a car, casket, minister, non-religious celebrant, music, and service. There might be charges for additional services such as order of service, cars, and flowers etc. We would suggest contacting a few different funeral services to gather as much information and to find one you feel most comfortable with. The funeral directors will go through all options for a service with you, for example whether you would like a religious or nonreligious service, with music or without.

There should not be a cost for cremation or burial of a baby over 24 weeks. Dukinfield is the only local cemetery with a designated baby garden. You will not be charged for the grave within this baby garden but there is a requirement to have a plaque on a baby’s grave for which there is a charge by Tameside Council. It is £260 for a natural stone plaque with up to 70 characters, or £390 for a granite plaque with up to 70 characters. There is additional £2 per extra character and £100 for a motif or photo.

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You can choose to have a burial in a cemetery of your choice and the funeral director will discuss these options.

Some families want to consider taking their baby home for a short period of time, and often there is no legal reason why you cannot do so either from the maternity unit, the Bereavement Centre (mortuary) or funeral home. Some families like to take their baby home or to visit a special place and then will arrange to take the baby directly to the funeral home. Some families have chosen to take their baby home the night before the funeral, and this could also be arranged with the funeral director. Staff caring for you will be able to discuss your options and preferences. There might be certain circumstances where this is not recommended, for example the condition of the baby at birth or if there is to be a post-mortem. Delays in transferring for a post-mortem can result in changes within the baby’s body and therefore can affect the results. The bereavement midwife and staff can discuss this further with you.

Any baby not being discharged from labour ward, will be transferred to the Bereavement Centre (mortuary) where the bereavement team will care for your baby until arrangements have been made for the funeral director to collect your baby. You can contact the team to arrange a visit during this time on: 0161 922 6059. The staff will support you if you would like to transfer your baby yourselves to the Bereavement Centre.

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Review of care When a baby dies, there is a process as part of standard NHS care that all baby deaths are reviewed. The hospital reviews the care for all babies that have died from 22 weeks regardless of the cause of death. The review process is called the Perinatal Mortality Review Tool (PMRT) where obstetricians, midwives, neonatologists, and governance staff will review your care during pregnancy, during labour and after birth. An external member of staff from another hospital will also join to review the care. You will have a named family liaison who will be a point of contact and you will receive written information about this review process, with the opportunity to be involved and ask questions. The outcome from this review will be shared with you at your consultant debrief appointment.

When a baby dies over 37 weeks gestation in labour or soon after birth, in addition to the PMRT an external body will carry out a review with parental consent. This is a programme called The Maternity and Newborn Safety Investigations (MNSI, formally known as HSIB), which was formed as part of the government national strategy to improve maternity safety across the NHS in England. You will be contacted following discharge to ask for consent to this.

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Neonatal death Some parents have been aware there are medical complications that mean their baby is expected to die shortly after the birth. For some parents this is not the case, and the death of your baby is unexpected.

You will have lots of questions to understand what happened. The death of a baby is traumatic for parents, and staff will be there to ensure you have physical and emotional support. The midwives and doctors caring for you and your baby will answer questions but some questions may not be able to be answered in the immediate postnatal period.

Things you may wish to consider The staff will support you in caring and making memories with your baby if this is what you would like to do. You are very welcome to bring any personal items you have prepared for your baby at home into hospital, such as you blankets, Moses’ basket, clothing, or soft toys.

You may also wish to bring other items such as a letter, keepsakes, music, photos, or story book to read to your baby.

You might have already named or wish to name your baby. If so, you can let the staff know how you would like them to refer to your baby.

Some families have found it comforting to spend time with their baby this might not be something you have considered, and you might feel unsure about what to do. There is no right or wrong decision, spending time with your baby might feel natural, it allows time for you to say goodbye or to make some precious memories. This could include taking photographs, hand/foot prints, castings, clay foot prints, or having other visitors to come and meet your baby. You might also want to bath and dress your baby. The midwives caring for you will be able to support you in these difficult decisions. The hospital has a selection of baby items such as blankets, cribs, clothing, and gowns which can be provided for you to use. Bereaved families have donated a ‘cuddle cot’. This is equipment that consists of a cold mattress to lay in the cot that has been specially designed to allow families to spend longer time with their baby.

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Cuddle cots do this by slowing down the changes in the baby’s body following death and by doing so provides families with valuable time to make precious memories. The midwives caring for you will offer you a memory box that can be a special place for keepsakes to remember your baby by. This can include scan pictures, hand and foot prints or other personal items. A memory box can help you to acknowledge your grief and talk about your baby to friends and family.

If your baby was one of a multiple pregnancy where their sibling has lived, staff can support you in making memories with your babies together if this is what you chose to do.

Understanding what happened There are specific investigations that may be offered to help try and understand what happened and why your baby died. The staff caring for you will be able to provide you with more details of the options available to you. These can include post mortem examination, specialist examination of the placenta, blood tests and chromosome analysis. Staff will provide you with written post-mortem information to help you make informed decisions.

It can take 6-18 weeks for all the investigations and reports to be available but the length of time will depend upon which investigations you have consented to, and we would recommend avoiding pregnancy until the results are received. The bereavement midwife will be able to provide updates and once the reports are available you will be invited to attend a debrief appointment with your consultant to discuss these results. It might be useful to write down any specific questions you might have ahead of this appointment. It is important to let us know if you move house during this time. If you prefer not to have a face-toface appointment, a telephone or letter follow up can be arranged, we will check your preference before the appointment.

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Arrangements after birth Following a neonatal death, the coroner must be informed, and they will decide if the Medical Cause of Death certificate can be immediately issued to the Registrar of Births and Deaths or if a postmortem is required. If the circumstances around a baby’s death are unclear, the coroner can order a post-mortem without parents’ consent. The coroner can request further investigations or an inquest if they are not satisfied with the initial cause of death. When the coroner agrees, the Medical Cause of Death Certificate (MCCD) can be provided to the registrar for births and deaths. Staff at the hospital will complete this and email it to the registrar, who will then contact you to arrange an appointment to register your baby’s birth and death. The cause of death details will be recorded on the certificate and should be explained to you. If you are married, either partner may register the birth. If you are not married, the mother must attend to register the birth and the partner must attend if they would like their name of the certificate. The registrar will provide you with a certificate that you will need for the burial or cremation.

When a baby was born alive that subsequently died, it is a legal requirement for parents to arrange the burial or cremation, but the decision for a funeral service of any kind is optional. A funeral can be an opportunity for parents to say goodbye in the presence of family and friends. To arrange a funeral, you will need to contact a funeral director of your choice, the bereavement midwife can provide some support with this. Most funeral directors will not charge for a standard funeral – which might consist of a car, casket, minister (religious or celebrant) and service. There might be charges for additional services such as order of service, cars, and flowers etc. We would suggest contacting a few different funeral services to gather as much information to find one you feel most comfortable with. The funeral directors will go through all options for a service with you, for example if you would like a religious or non-religious service, with music or without. There should not be a cost for cremation or burial. Dukinfield is the only local cemetery with a designated baby garden. You will not be charged for the grave within this baby garden. There is a requirement to have a plaque on a baby grave for which there is a charge by Tameside Council. It is £260 for a natural stone plaque with up to 70 characters, or £390 for a granite plaque with up to 70 characters. There is additional £2 per extra

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character and £100 for a motif or photo. You can choose to have a burial in a cemetery of your choice and the funeral director will discuss these options.

Some families want to consider taking their baby home for a short period of time, and often there is no legal reason why you cannot do so either from the maternity unit, the hospital Bereavement Centre (mortuary) or a funeral home. Some families like to take their baby home or to visit a special place and then will arrange to take the baby directly to the funeral home. Some have chosen to take their baby home the night before the funeral, and this could also be arranged with the funeral director. Staff caring for you will be able to discuss your options and preferences. There might be certain circumstances where this is not recommended, for example the condition of the baby at birth or if there is to be a post-mortem. Delays in transferring for a postmortem can result in changes within the baby’s body and therefore can affect the results. The bereavement midwife and staff can discuss this further with you.

Any baby not being discharged from labour ward will be transferred to the Bereavement Centre (mortuary) where the bereavement team will care for your baby until arrangements have been made for the funeral director to collect your baby. You can contact the team to arrange a visit during this time on: 0161 922 6059.

The staff will support you if you would like to transfer your baby yourselves to the hospital Bereavement Centre.

16

Review of care When a baby dies there is a process as part of standard NHS care that all baby deaths are reviewed. The hospital reviews the care for all babies that have died from 22 weeks regardless of the cause of death. The review process is called the Perinatal Mortality Review Tool (PMRT) where obstetricians, midwives, neonatologists, and governance staff will review your care during pregnancy, during labour and after birth. An external member of staff from another hospital will also join to review the care. You will have a named family liaison who will be a point of contact and you will receive written information about this review process, with the opportunity to be involved and ask questions. The outcome from this review will be shared with you at your consultant debrief appointment.

When a baby dies over 37 weeks gestation in labour or soon after birth, in addition to the PMRT an external body will carry out a review with parental consent. This is a programme called The Maternity and Newborn Safety Investigations (MNSI, formally known as HSIB), which was formed as part of the government national strategy to improve maternity safety across the NHS in England. You will be contacted following discharge to ask for consent to this.

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Compassionate Induction (TOPFA) Sometimes, pregnancies do not progress as planned and through routine tests a baby can be found to have serious anomalies. Every experience and circumstance are different - we understand that making decisions about your pregnancy and going through the process is extremely upsetting and staff are here to support you each step of the way.

There are different ways of ending a pregnancy, and this will depend upon your circumstances and the stage of pregnancy you are at.

Nothing can make this easy, but you will be provided with information to help prepare and individualise your care. In most circumstances vaginal birth will be recommended. The staff caring for you will discuss what options are available to you and how this will happen.

During labour and birth, you will have your own midwife care who will ensure that you are comfortable, offered pain relief and supported at all times. You will be able to have up to 2 birth partners stay with you throughout.

Things you may wish to consider When you are planning what to pack for your hospital admission in addition to your own clothing/nightwear your birth partner/s can also bring any items they will require. You are very welcome to bring any personal items you have prepared for your baby at home into hospital, such as your own baby blankets, Moses’ basket, clothing, or soft toys.

You may wish to bring other items such as a letter, keepsakes, music, photos, or story book to read to your baby.

You might have already named or wish to name your baby. If so, you can let the staff know how you would like them to refer to your baby.

Some families have found it comforting to see and hold their baby after birth, either straight away or later. This might not be something you have considered, and you might feel unsure about what to do. You might be worried about what your baby will look like.

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You might want the midwives to take a picture or explain what your baby’s appearance is like before you decide. There is not a right or wrong decision. Spending time with your baby allows time for you to say goodbye or to make some precious memories. This could include taking photographs, hand/foot prints, castings, clay foot prints, or having other visitors to come and meet your baby. You might also want to bath and dress your baby. The midwives caring for you will be able to support you in these difficult decisions. The hospital has a selection of baby items such as blankets, cribs, clothing, and gowns which can be provided for you to use. Bereaved families have donated a ‘cuddle cot’. This is equipment that consists of a cold mattress to lay in the cot that has been specially designed to allow families to spend longer time with their baby. Cuddle cots do this by slowing down the changes in the baby’s body following death and by doing so provides families with valuable time to make precious memories. The midwives caring for you will offer you a memory box that can be a special place for keepsakes to remember your baby by. This can include scan pictures, hand and foot prints or other personal items. A memory box can help you to acknowledge your grief and talk about your baby to friends and family.

If your baby was one of a multiple pregnancy where their sibling has lived, staff can support you in making memories with your babies together if this is what you chose to do.

Understanding what happened There are specific investigations that could be offered to help try and understand what happened and why your baby died. The staff caring for you will be able to provide you with more details of the options available to you. These can include post mortem examination, specialist examination of the placenta, blood tests and chromosome analysis. Staff will provide you with written post-mortem information to help you make informed decisions.

It can take 6-18 weeks for all the investigations and reports to be available, but the length of time will depend upon which investigations you have consented to. We would recommend avoiding pregnancy until the results are received. The bereavement midwife will be able to

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provide updates and once the reports are available you will be invited to attend a debrief appointment with your consultant to discuss these results. It might be useful to write down any specific questions you have ahead of this appointment. It is important to let us know if you move house during this time. If you prefer not to have a face-to-face appointment, a telephone or letter follow up can be arranged, we will check your preference before the appointment.

Arrangements after birth Following the birth of your baby, you will have the difficult decision of what you would like to happen to the baby.

Under 24 weeks There is no legal requirement to have a cremation or burial when a baby is born under 24 weeks with no signs of life and there are several options available you may wish to consider.

The hospital offers a monthly communal cremation for babies under 24 weeks, which takes place on the last Wednesday of the month at Dukinfield Crematorium. Each baby is placed into their own individual container, and they are cremated respectfully together. Although families are not invited to attend, this remains respectful. Music is played whilst babies are carried to the front of the crematorium.

Following the cremation, no individual ashes will be available, the ashes are scattered together onto Rose Bed B outside the crematorium where families can visit and have time there.

Some families prefer to make their own arrangements for their baby.

The hospital does not arrange individual funerals, but you can make private burial or cremation arrangements by contacting a funeral director of your choice. Some funeral directors will not charge you for this service, however because there is no legal requirement for a funeral under 24 weeks, some will have a charge for their service. We would suggest contacting a few different services to gather as much information before making a final choice you feel comfortable with. It is important to note that under 16 weeks it is unlikely there will be any ashes available following cremation.

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When a is baby born under 24 weeks without signs of life there is no legal reason why you cannot take a baby home - staff caring for you will be able to discuss your options and preferences. Some families decide to take their baby home to bury in the garden or in a planter with flowers or a shrub. It is important to take time to consider your options, thinking carefully about any restrictions at your home (for example if you live in rented property or have plans to move home). For this reason, a planter would be a more practical option for moving house in these circumstances.

For further guidance you can visit www.hta.gov.uk. The local Environmental Health Department or Environmental Agency can be a useful source of advice on this matter. The staff will complete any relevant documents required to facilitate taking your baby home.

You might not be able to decide before being discharged, and staff from the hospital will contact you again to discuss. Your baby will remain at the Bereavement Centre during this time however, the Human Tissue Authority advise that this should not exceed 12 weeks. If we have not had any updates after 12 weeks, the hospital will make arrangements for the under 24-week communal cremation.

Over 24 weeks If your baby is stillborn after 24 weeks, you will need to register the stillbirth with the local registrar of births and deaths. A midwife will complete a medical certificate of stillbirth which will be emailed by us to Tameside Registrars to notify them of the birth. The cause of death details will be recorded on here and should be explained to you. Your contact details will be included, and the registrar will contact you to arrange an appointment. If you are married either partner may register the birth. If you are not married the mother must attend to register the birth and the partner must attend if they would like their name of the certificate. The registrar will provide you with a certificate that you will need for the burial or cremation.

If your baby is stillborn over 24 weeks or a neonatal death, it is a legal requirement to arrange the burial or cremation, but the decision for a funeral service of any kind is optional.

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A funeral can be an opportunity for parents to say goodbye in the presence of family and friends. To arrange a funeral, you will need to contact a funeral director of your choice. The bereavement midwife can provide some support with this. Most funeral directors will not charge for a standard funeral – which might consist of a car, casket, minister (religious or celebrant) and service. There might be charges for additional services such as order of service, cars, and flowers etc.

We would suggest contacting a few different funeral services to gather as much information to find one you feel most comfortable with. The funeral directors will go through all options for a service with you, for example whether you would like a religious or non-religious service, with music or without. There should not be a cost for cremation or burial. Dukinfield is the only local cemetery with a designated baby garden. You will not be charged for the grave within this baby garden.

There is however a requirement to have a plaque on a baby grave for which there is a charge by Tameside Council of £260 for a natural stone plaque with up to 70 characters, or £390 for a granite plaque with up to 70 characters. There is an additional £2 per extra character and £100 for a motif or photo. You can choose to have a burial in a cemetery of your choice and the funeral director will discuss these options.

Some families want to consider taking their baby home for a short period of time, and often there is no legal reason why you cannot do so either from the maternity unit, the hospital Bereavement Centre (mortuary) or a funeral home. Some families like to take their baby home or to visit a special place and then will arrange to take the baby directly to the funeral home. Some have chosen to take their baby home the night before the funeral, and this could also be arranged with the funeral director. Staff caring for you will be able to discuss your options and preferences. There might be certain circumstances where this is not recommended, for example the condition of the baby at birth or if there is to be a post-mortem. Delays in transferring for a postmortem can result in changes within the baby’s body and therefore can affect the results. The bereavement midwife and staff can discuss this further with you.

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Any baby not being discharged from labour ward will be transferred to the Bereavement Centre (mortuary) where the bereavement team will care for your baby until arrangements have been made for the funeral director to collect your baby. You can contact the team to arrange a visit during this time on: 0161 922 6059.

The staff will support you if you would like to transfer your baby yourselves to The Bereavement Centre.

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Financial support Unfortunately, under 24 weeks of pregnancy you are not entitled to maternity benefits, this includes statutory maternity pay, sure start grants and any additional healthy start vouchers. If you are employed, you can speak to your employer about compassionate leave. Time of sick should be treated as pregnancy-related sickness – but this will be up to you what you want to certify as with your employer.

Your employer can not use certified pregnancy related absence for disciplinary or redundancy.

If you have had a stillbirth over 24 weeks or neonatal death within 28 days of life, you are entitled to any maternity leave and pay that you qualify for. Your partner will also be entitled to any paternity leave and pay.

Postnatal care information and support Following the birth of your baby, you will require a period of time to recover physically. This part of the booklet aims to provide general advice for what is normal physical recovery. If you have any urgent postnatal concerns, you can contact the maternity unit 24/7 for care and advice 0161 922 6655 (option 5).

After the birth of your baby, midwives will agree a plan of care for you before you are discharged. You will be offered a home postnatal visit to check that you are well and support you in these first few days. The visit will be either a midwife that works in community or one of the bereavement midwives. The bereavement midwives will continue to provide regular telephone contact for postnatal follow up and support; they can be contacted on 07341 062094 or by email bereavementmidwives@tgh.nhs.uk

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Bleeding after birth (Lochia) It is normal to bleed from the vagina following birth and this can be quite heavy at first but should reduce in the following days and weeks.

The bleeding usually is bright red, slowly changing to pink/brown and eventually stops. This can slow down in the first 7 – 10 days but can take up to 4 - 6 weeks to finally stop. You should use normal maternity pads and change them regularly, avoiding the use of tampons (they can increase the chance of infection) until you have a normal period again.

Your midwife will ask you about your blood loss including the amount and colour of your loss. It is important to tell your midwife if you pass any large clots, your blood loss becomes heavier, you have abdominal pain or you notice any offensive smell.

Uterus (womb) The uterus continues to contract to return to its pre pregnancy size and can take up to 6 weeks. If you experience any heavy bleeding, abdominal pain, a high temperature or offensive smelling blood loss you should contact your GP or maternity unit as you may require assessment for treatment of infection.

Passing urine/bowels You may find passing urine slightly uncomfortable initially after giving birth, this should begin to ease quite quickly. It helps to keep your urine diluted by drinking plenty of fluids. Stress incontinence (leaking of urine when coughing or sneezing) can occur – pelvic floor exercises are an ideal way to strengthen the muscles and will help to reduce this risk now and in the future. Many women can feel anxious about their first bowel movement following birth, and it can be common to have some constipation immediately post birth. Eating a high fibre diet including fresh fruit and vegetables and drinking plenty of fluids can help prevent this. Haemorrhoids (piles) can be common following birth and can be treated with haemorrhoid cream, lactulose, or pain relief.

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Breasts If you were over 18 weeks pregnant when you gave birth, it is likely that you were given an oral tablet at the hospital to suppress the lactation of breast milk. If your breasts become engorged, painful or any other concerns please contact the bereavement midwives or labour ward team for further advice 0161 922 6655 (option 5).

Some mothers choose to continue to express milk and donate milk in memory of their baby. While this does not suit everyone, some families find comfort in continuing to express and donate. There is a strict screening process and therefore this will not be an option for all. If this is something you would like to consider further information can be found at www.milkbankatchester.org.uk/donate/donationafterloss

Legs Before leaving the hospital, a midwife will have completed a risk assessment to determine your individual risk of developing a deep vein thrombosis (DVT). If you are high risk and provided with blood thinning injections, you should continue to use these as prescribed.

If you develop any abnormal pain, swelling or redness in the calf muscle of one leg you should seek urgent advice/attend A+E department.

Perineum This is the area between your vagina and the anus. The midwife may ask you about your perineum, if it is painful or not – especially if you have had any stitches. In this case the midwife might observe the perineum to make sure it is healing well. If you have any stitches, they can take around 2 weeks to completely dissolve. During this time, you should change your maternity pad frequently. Good hand hygiene is especially important to reduce the risk of infection – you should wash your hands before going to the toilet as well as after. You can use simple pain relief for any discomfort.

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Caesarean section If you had a caesarean section, it is usual to have a dressing on your wound that will remain in place for 5 days. This dressing will be removed by a midwife on day 5 who will check the wound is healing well. Dissolvable stitches are usually used, but if the surgeon had used an alternative then the midwife will remove any non-dissolvable stitches. Make sure the wound is washed without soap and patted dry carefully. Loose clothing will help with comfort and reduce rubbing on the wound site. If you notice any bleeding or pus coming from the wound, you can contact your GP or maternity labour ward for advice.

Continue to take regular pain relief as long as you need it. You should avoid any heavy lifting and do not drive for 6 weeks. You can check with your insurance company for any further details.

Postnatal Follow up Your GP will be notified of the birth and can provide a 6-week postnatal appointment to check your physical recovery following birth. You should contact them to arrange this. Alternatively, you can speak to the obstetrician at your follow-up appointment. You will be offered a postnatal follow-up with your consultant at the hospital.

The appointment will be arranged when all the results and reports are available – depending on the investigations performed this can take 6-18 weeks (about 4 months). During this time the bereavement midwives will remain in contact with you.

You should seek medical advice without delay if these occur.

• • • • • • •

A high temperature over 38C Abdominal, pelvic, or perineal pain with an unpleasant smell Sudden or very heavy bleeding that gets heavier with or without clots.

Leg swelling and tenderness, or shortness of breath.

Chest pain Persistent or severe headache Worsening reddening and swelling of the breast lasting more than 24 hours

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Emotional wellbeing and grieving In addition to grieving and the emotional impact following the loss of a baby, there are many hormonal changes that take place in your body following birth that will also affect your mood. When grieving, it can be normal to feel a variety of feelings such as lack of interest in people/things, being tearful, feeling angry, guilt, lack of energy, loss of appetite, feeling isolated and having difficulty sleeping. It is important to remember you are not alone and there is lots of support and information available. The bereavement midwives will be in contact to offer support following discharge home, provide advice and refer for further support if required. Email bereavementmidwives@tgh.nhs.uk If you have any thoughts of harming yourself, it is important to seek medical help straight away – speak to your GP or midwife. If you are very concerned about yourself, go to your local A&E department.

Chaplaincy The hospital chaplains are a multi-faith team that can offer pastoral, spiritual and religious care. They are available to support you and your family and will be there to listen. The chaplains can be contacted to attend the maternity unit/ ward for a baby blessing. A Muslim chaplain can be requested to perform the Athaan – please ask the staff for support with contacting a chaplain.

The hospital grounds have a baby garden, which is a small area where families are welcome to come and sit on your own for some quiet reflection at any time of the year.

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Remembrance Service Every year the maternity staff and chaplains hold an annual baby memorial service. The service can be a meaningful way for bereaved families to come together to honour all babies that are forever missed and dearly loved. A candle is lit in memory of each baby and their names are read out during the service. Some staff and parents will do a personal reading or poem. You are welcome to attend the service on your own or with family and friends and the candle can be taken home following the service. You can join the midwives and chaplain after the service for refreshments and any support. The service is at 2pm on the 3rd Sunday in November every year at: The Albion Church Stamford St East Ashton Under Lyne OL6 6QQ Nationally Baby Loss Awareness Week BLAW is held every year between 9-15th October. To mark the end of the week there is an international wave of light at 7pm on the 15th of October for parent to light a candle at the same time across the world.

Each year we come together for a Wave of Light on this day, meeting in the baby garden at Tameside from 6.30pm ready to light our candles at 7pm.

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Other useful contacts or information Ellie’s Gift - Baby Loss support app. Focus on calm birth planning, relaxation and support.

Ellie-Phone Support Line: 0333 7722534 Email: Support@relaxwithlucy.co.uk www.relaxwithlucy.co.uk/ellies-gift-app Cradle Charity - Supporting any pregnancy loss before 24 weeks.

Phone: 0333 443 4630 Email: info@cradlecharity.org www.cradlecharity.org Finding Rainbows - A local charity based in Ashton, who provide support for anyone following the death of a baby.

Phone: 07340 799387 Email: finding.rainbows@outlook.com www.findingrainbows.org The Milk Bank - For families who would like more information on donor milk.

Phone: 01244 362226 Email: milkbank.chester@nhs.net www.milkbankatchester.org.uk

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Muslim Bereavement Support Service - A non-profit organisation serving the Muslim community by supporting bereaved women who have lost a loved one.

Phone: 020 3468 7333 Email: info@mbss.org.uk www.mbss.org.uk SANDS - A safe space for you to grieve and to find support, whether you are a parent, sibling, grandparent, NHS professional or friend.

Helpline: 0808 164 3332 Email: helpline@sands.org.uk www.sands.org.uk

Antenatal Results & Choices - Providing you with impartial information and support to help you decide on your next steps.

Helpline: 020 7713 7486 Email: info@arc-uk.org www.arc-uk.org The Twins Trust Bereavement Service - Support for all parents and carers of twins, triplets or more who have died whether it was during or after pregnancy.

Helpline: 0800 138 0509 Email: enquiries@twinstrust.org www.twinstrust.org/bereavement.html

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Image - Local child loss bereavement counselling support available.

Helpline: 0333 772 0237 Text: 07860 017037 E-mail: kate@pregnancyhelpline.co.uk www.pregnancyhelpline.co.uk Reuben’s Retreat - Supporting families who have suffered the loss of a child or have a child living with medical complexities.

Phone: 01457 680 023 Email: enquiries@reubensretreat.org www.reubensretreat.org

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Baby loss and support for Dads Dad Matters - Help dads have successful relationships with their families, and to support dads with anxiety, stress and mental health issues.

Phone: 0161 344 0669 Email: DadMatters@homestarthost.org.uk www.dadmatters.org.uk/loss Angels United - A peer to peer bereavement support group, football club & family co-founded by a group of dad’s that all have one thing in common, they have all suffered the heartbreak and devastation of losing a child at any stage of life.

Email: info@angelsunitedfc.co.uk www.angelsunitedfc.co.uk

Miscarriage for Men - Guidance, self help techniques to combat these emotions, a forum with real life stories like your own, a chat function and many other helpful tools. www.miscarriageformen.com

Reference: Tameside Hospital - A practical guide for bereaved parents Publication date: October 2024 Review date: October 2026

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