Princess Alexandra Hospital - Following the loss of your baby

A butterfly lights beside us, like a sunbeam….

And for a brief moment its glory and beauty belong to our world…

But then it flies on again and although we wish it could have stayed, We are so thankful to have seen it at all.

Anon

The loss of a baby is 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.

If you have any questions or want to discuss anything please feel free to contact the Bereavement Midwife Advisors on 01279 962694 or the Bereavement Team on 01279 827090. Our office hours are Monday to Friday 8.30am to 4.30pm. We do not work weekends or bank holidays but messages can be left on our secure voicemail and we will get back to you as soon as possible.

Late pregnancy loss is defined as pregnancy loss after 14 weeks gestation.

Late miscarriages are less common than early miscarriage and occur in about 1-2% of pregnancies.

Possible Causes of Pregnancy Loss

Structural

A weak cervix or one that dilates too soon can lead to late miscarriage. Women who are at risk will be offered a scan to measure the length of the cervix and may need a stitch in their cervix during the second trimester.

Infections

This is quite rare however; any severe infection that develops during pregnancy could result in miscarriage. These may include a urinary tract infection or kidney infection, food poisoning, infections of the blood such as hepatitis, human immunodeficiency virus (HIV), rubella and toxoplasmosis.

Others

Rare structural problems; these can be problems such as abnormally shaped womb or large fibroids that grow in the womb. These can inhibit the attachment of the placenta or the baby’s growth and may lead to miscarriage. Genetic factors, blood disorders i.e Antiphosphoidlipid syndrome (a syndrome where the blood is more likely to clot), thrombophilia (an inherited condition), immune factors, diabetes and epilepsy can all be potential factors resulting in miscarriage.

Sometimes there is no underlying problem and most couples are likely to have a successful pregnancy in the future.

Management of Pregnancy Loss

Medical Management (taking medicines)

As with early miscarriage this can be used to treat late miscarriage. This involves taking one oral tablet and then returning 48 hours later for a series of tablets and/or vaginal pessaries to help the neck of the womb open and allow the pregnancy to pass. Once admitted for the second dose of medication the process may take from a few hours up to a few days. You may experience some bleeding or spotting for up to two weeks after your delivery.

Sometimes if the bleeding is very heavy or there is some pregnancy tissue remaining in the womb, a surgical procedure may need to be performed. This is known as surgical management of miscarriage and is performed under general anaesthetic. This is 95% successful in completing the miscarriage.

End of Pregnancy, Decisions 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 pregnancy.

Throughout this time and indeed when an anomaly is first confirmed it is very common for parents to feel a range of emotions including a deep sense of sadness, anger and guilt although it is recognised that how parents react is very individual. Parents are encouraged to access information by a charity called Antenatal Results and Choices (ARC). Parents are usually given an information leaflet from ARC by the screening team.

Throughout this time parents are always given time to think about their decisions and will have opportunities to have questions answered. Equally parents are always supported by a team of staff, including specialist midwives, consultants and chaplaincy if wished. This helps parents to make decisions about various issues such as how the pregnancy is ended, making memories of their baby and further investigations.

There are different ways to end a pregnancy. This can be done either with an operation or medication. 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.

Follow up Care

After pregnancy has ended, parents are offered a sensitive appointment with the Fetal Medicine Consultant and the Bereavement Midwife Advisors. This is usually six weeks, (however this can take longer when awaiting results) after the pregnancy loss and takes place at the hospital. At this appointment parents are given the opportunity to ask any further questions and discuss results of the investigations. Some parents wish to discuss trying for another baby and the implications the anomaly may have on this. However other parents may feel they need more time before they can do this. It is recognised the grieving process following the end of pregnancy for an anomaly is very individual.

You will have some blood tests, vaginal swabs and swabs of the placenta as well as urine tests to determine if there were any infections or blood disorders that could have led to you losing the baby. The results of all of these will be discussed with you at your follow-up appointment with the Fetal Medicine Consultant and Bereavement Midwife Advisors.

Histological Examination

The placenta will be sent for examination to determine if there are any abnormalities or signs of infections which may help to explain why the pregnancy loss occurred.

Cytogenetic Testing

Cytogenetic testing will be offered to all parents who have suffered a late miscarriage. A small sample of placenta and cord will be sent to the specialist hospital for analysis.

The results can take from 6-12 weeks to be available and will be sent to the Fetal Medicine Consultant and discussed with you at the Sensitive Clinic appointment.

Post Mortem Examination

A post mortem is offered to all parents who have experienced a pregnancy loss at 16 weeks gestation and over. A post mortem can be very helpful in identifying why your baby died. Although a post mortem does not always find a definite cause for late miscarriage or fetal anomaly it may help exclude some causes that you may be worried about. In cases of fetal anomaly it can also provide further information about defects that were present e.g. genetic or chromosomal conditions, structural anomalies or any other conditions.

Some parents are certain from the beginning that they want a post mortem, others may not be sure. It is your decision so take time to think it over. If you have any questions or concerns then your doctor or midwife or the Bereavement Midwife Advisors will be able to talk it through with you.

On the next few pages we have given a brief summary of the post mortem process but you will receive the recommended Stillbirth and Neonatal Charity (SANDS) Bereavement support book - section ‘Understanding Why Your Baby Died’ -information for parents.

This may answer any further questions you have.

Hospital Post Mortem

The doctor or midwives will ask you if you wish to consider a post mortem. A post mortem cannot be carried out without your consent and you will be given opportunities to discuss the process thoroughly. Once you decide you want a post mortem you will be asked to sign a consent form and consent will be taken by a post mortem trained consent taker. You will then be given a copy of the post mortem and a cooling off period of 24 hours or longer if you wish, when you can change your mind should you choose to do so.

Some questions you may wish to ask about the post mortem examination.

• When will it be carried out?

• Where will it take place?

• How long will it take?

• When the results will be given to you, and who you can discuss these with?

• When and from whom you can get a copy of the results.

The post mortem will take place in Addenbrookes Hospital and usually the baby is transferred there by the funeral directors and returns to The Princess Alexandra Hospital mortuary in about 10 working days once all examinations are completed. You will be notified when the baby leaves the Princess Alexandra Hospital and when the baby has returned.

As part of the post mortem process, small samples of tissues 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 records. This is so that they can be re-examined in the future to try and find out more if new tests become available.

If you do not wish for these tissue samples to be retained as part of your baby’s medical records, Addenbrookes can sensitively dispose of these samples with your consent. You can also choose for these samples to be returned to the Princess Alexandra Hospital mortuary where you can have the option of having the samples returned to you, sensitively disposed of or having the samples buried / cremated with your baby. This can be discussed further with the Bereavement Midwife Advisors.

The results of the post mortem can take up to 8 weeks from when the baby is returned to Princess Alexandra Hospital. Once the results are available you will be invited to the Sensitive Appointment to discuss this with the Fetal Medicine Consultant and the Bereavement Midwife Advisors, you will be given a copy of the post mortem if you wish.

If you choose not to have a post mortem, blood tests, swabs, examination of the placenta and cytogenetic testing will be part of the investigation process to try and ascertain a cause of death of your baby.

Photography

Families are encouraged to take photos and can use their own mobile phones and cameras if they so wish.

However, before you go home you will be asked if you would like the staff to take photographs for you. If you agree you will be asked to sign a consent form. If you do not consent to photographs your wishes will be respected and no photos taken. Some parents feel they do not want photos but wish for staff to take photographs and keep them on the hospital database file in case one day in the future they change their minds. This can be done but consent is needed. Any photos on file are kept on a secure data protected digital file by medical photography. Photographs can be kept for up to 25 years after they were taken.

Photos taken are memories and we have clothes if you need them, all new and donated to The Princess Alexandra Hospital. You may wish to take photos with siblings or family members and this is facilitated by staff. We have the ability to photoshop the pictures if you wanted them in black and white or the colour altered slightly.

“I decided that it would be better to have a photo I might never look at than to want a photo that I do not have”

Dad.

Mementos

Keeping mementos of your baby can help the grieving process. Depending on what stage of pregnancy loss occurred we can provide these for you at your request. Some mementos we provide are:

• Hand and foot prints taken by staff

• Photographs

• Lock of hair

• Name bands

• Tape measure

We provide memory boxes donated by the 4Louis, Simba and Sands charity, and these contain a memory certificate, teddy, candle and small book. They are also a lovely way in which to keep all your baby memories and mementos.

When a baby has died before 24 weeks gestation registration is not a legal requirement. However, there is a memento certificate for the birth and your midwife will complete this for you.

It is not a legal document but may be a valued family record for you.

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 wish to see your baby and spend some time with him/ her this is possible straight after the birth or at a later date. If you wish to see your baby at a later date, this can be arranged with the Bereavement Team who will support you with this. The viewing will be held in the hospital viewing room.

If other family members, including brothers and sisters wish to see the baby they are welcome to do so with your consent.

You may wish to dress your baby in clothes you have bought or chosen and we are happy to help you with this.

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 hospital chaplains available to help and support you with this.

The hospital chaplains are also able to conduct a blessing or naming ceremony and issue a small certificate for you to keep.

It is possible to see your baby after a post mortem but you may need to take some advice regarding appearance. Smaller babies can deteriorate very quickly and it may be advisable to see them before the post mortem rather than afterwards. One of the Bereavement Team or the Bereavement Midwife Advisors will always be happy to advise you if you feel you need some guidance.

Taking your Baby Home

Some parents wish to take their baby home prior to the funeral. There is no legal reason why you should not do this.

How long can I keep my baby at home?

This depends on your baby’s condition and the temperature of the room in which the baby will be kept. If you wish for your baby to have a post mortem this needs to be done as soon as possible. Ideally you should return after 24 hours.

If you decide to take your baby home you will be asked to sign a form confirming you are taking responsibility for your baby whilst at home and that you will either bring them back to the hospital or to the funeral director.

There is a cold cot cooling system available to borrow to take home and the staff will support you in how to set this up. 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 the baby, it may be best to place him/her on a pillow and hold the pillow.

You may wish to consider these changes when deciding how long to have your baby home.

Registering Your Baby’s Death

If Your Baby Died Before 24 Completed Weeks of Pregnancy:

• If your baby died before 24 completed weeks of pregnancy, you are currently unable to register his or her birth at a registry office. However, many hospitals give parents a certificate of birth as a keepsake. If your hospital did not provide you with a certificate, you are very welcome to download and print a copy of our version (available soon), or you could create one yourself. You could ask a member of staff at the hospital or a chaplain to sign it for you.

• If you want to arrange your baby’s funeral yourself, you will need to get a form from the hospital to give to your funeral director. The form confirms that your baby was born before 24 weeks of pregnancy and showed no signs of life.

If Your Baby was Stillborn After 24 Completed Weeks of Pregnancy:

• If your baby was stillborn after 24 completed weeks of pregnancy you will need to register your baby’s stillbirth at a registry office. This need to be done before 6 weeks have passed since the day your baby was born (3 weeks in Scotland and 3 months in Northern Ireland). You will need to take a medical certificate of stillbirth with you, which will be given to you by a doctor or midwife

Who needs to register my baby’s birth or stillbirth?

• Married parents: Either the Mother or Father can register the birth or stillbirth.

• Unmarried parents: If both parents wish for the baby’s father’s name to be on the birth and death certificates, they will usually need to go to the registry office together, unless a declaration signed by the person who is not attending can be provided (your local registry office will be able to explain how to do this).

If the father registers the stillbirth and the parents aren’t married, the mother will need to make a ‘signed declaration’ (the registry office can explain how to do this).

• If your baby was stillborn and neither parent is able to go to the registry office within 6 weeks, please contact your local registry office to find out who else can register on your behalf.

Do I need to register the death of my baby before his or her funeral?

The stillbirth or death of your baby must be registered before a funeral can take place. If, for religious reasons, you need to hold your baby’s funeral very quickly, most registrars are able to issue you with a certificate of stillbirth or a death certificate out of normal office hours. The hospital staff will be able to give you the information you need to arrange to speak to your local registrar out of normal office hours.

Register a Stillbirth

This is always a difficult time but the information below should help make this task as easy as possible.

You can register the death of a stillborn child at any register office in the area you gave birth to your baby.

What you need to register a stillbirth

Before your appointment you will need to email the certificate of stillbirth given to you by the midwife or doctor to mccds@essex.gov.uk.

At the appointment we will ask you for the name, address and email of your funeral director.

After the appointment, you will be given:

• A certificate of registration, which includes any names you’ve chosen for your baby

• A green slip to permit burial or cremation

There’s no fee for registering.

• Essex: Book an appointment by calling us on 0345 603 7632

• Hertfordshire: Book an appointment by calling us on 0300 123 4045.

Funeral Arrangements

Following a pregnancy loss there are a few options available to you regarding the final arrangements for your baby.

Some families choose to bury their baby at home. This is a possibility and if this is your choice, please discuss this with the Bereavement Team and the Bereavement Midwife Advisors.

There are three options available to you. The Princess Alexandra Hospital can arrange a cremation or a burial or you can opt to make your own private arrangements.

For a Hospital arranged Burial/Cremation you will be asked to sign a form and a copy will be given to you.

Cremation

Here at the Princess Alexandra Hospital we offer a Cremation for any gestational age and this is held at Parndon Wood Crematorium, Parndon Wood Road, Harlow, Essex, CM19 4SF.

The funeral director will transfer your baby from the mortuary to the Crematorium. You will be able to be with the baby prior to the Cremation and this is in the chapel. There is the possibility to play some background music however if you would like a service you would need to organise a minister of your own choice to conduct the service. Cremations are held on weekdays at 9.30am.

It is very important to note that for some particularly smaller babies there may be very little or no cremated remains available at all. If you have any questions about this please speak to the Bereavement Team for them to advise you.

If there are cremated remains you can choose to have the cremated remains and scatter them in an area of your own choice or keep them. Families have individual and personal preference and we are here to support you with this. If there are cremated remains they will usually be available to you after 24 hours and will be ready for you to collect in a small white box.

Burial

If you would like an individual Burial this can take place at either Green Acres Burial Park, North Weald or Parndon Wood Crematorium, Harlow. For this you would be asked to visit the Burial Park/Cemetery and choose a plot. You will be asked to pay a fee and sign paperwork at the Burial Park/Cemetery prior to the Hospital arranging the funeral. At present the fees are Green Acres Burial Park £100 and Parndon Wood Cemetery £400.

If you do not want to have an individual burial then the Hospital can arrange for your baby to be buried in a communal area in Green Acres Burial Park at no cost to yourselves. For this you will not be able to attend the Burial but you will be notified of the date and the time and will be able to visit the area and lay flowers after.

For both Cremation and Burial, The Princess Alexandra contractual funeral directors will transfer the baby to either Parndon Wood Crematorium or Green Acres Burial Park.

For either Burial or Cremation you do not have to attend if you do not wish to do so. There is no hurry to decide and we will begin to contact you after 12 weeks if we have not heard from you regarding funeral arrangements.

If you have any mementos you would like to put in your baby’s casket please let one of the Bereavement Team know and we can advise you.

Annual Memorial Service

Each year in October, The Princess Alexandra Hospital NHS Trust organises a memorial service. The last few years this has been held at Green Acres Burial Park. This is organised by the Bereavement Midwife Advisors and the bereavement team who are volunteers. A candle is lit for each baby and families are invited to lay a flower on the memorial bench or take a pebble to remember their baby. Each year we make the service a little different but it is a time for remembering and reflecting. You will be sent an invitation if you consented to be on the mailing list. If you want more information please contact the Bereavement Midwife Advisors on 01279 962694.

We have a book of remembrance which we encourage parents to contribute to in the lasting memory of your baby,

This will be available to view at the memorial service.

Where to Find Further Support

Once you go home the Bereavement Midwife Advisors will contact you. The team will let the GP know you have been in hospital and are now at home. Contact your GP if you are concerned about your physical health. The GP is best placed to share any concerns about your recovery and can help and advise you both physically and emotionally.

Bereavement Midwife Advisors

The service is now available Monday to Sunday, 08.00 - 16.00. Outside of these hours you can email Kate and Rebecca on paht.maternitybereavement@nhs.net or please call Labour Ward on 01279 973203.

Bereavement Team (main hospital)

The Princess Alexandra Hospital NHS Trust

01279 82 7090

Child Bereavement UK

Support line 0800 028 8840

Email: support@childbereavemnetuk.org

www.childbereavementuk.org

Tommy’s Charity

www.tommys.org

Twins and Multiple Birth Bereavement Support Group

TAMBA BSG

Provides general and specialist advice

0800 138 0509

www.tamba.org.uk

Winston’s Wish

Charity for bereaved children

Helpline: 0808 802 0021

www.winstonswish.org.uk

ARC (Antenatal Results and Choice)

345 City Road

London, EC1V 1LR

Tel: 020 7713 7356 (Head Office)

This is a National Charity providing non-directive support and information to bereaved parents throughout and after antenatal screening and testing. Helpline is open Monday to Friday, 10.00am-5.30pm.

Call 0845 077 2290 or 0207 713 7486 from a mobile.

Stillbirth and Neonatal Death Society SANDS

0207 436 5881

Email: helpline@uk-sands.org

www.uk-sands.org

Petals Counselling based at Addenbrookes Hospital

0300 688 0068

www.petalscharity.org

The Miscarriage Association

Helpline 01924 200799

www.miscarriageassociation.org.uk

Ref: Princess Alexandra Hospital - Following the Loss of your Baby

Review Date: July 2025

Publication Date: July 2023

Adapted from East Herts “Pregnancy Loss under 24 weeks booklet”