Supporting you and your family after your baby dies

The world may never notice if a snowdrop doesn’t bloom,
Or even pause to wonder if the petals fall too soon.
But every life that ever forms or ever comes to be,
Touches the world in some small way for all eternity.
The little one we longed for was swiftly here and gone,
But the love that was then planted is a light that still shines on.
And though our arms are empty, our hearts know what to do,
Every beating of our hearts says that we love you.

We are truly sorry about the loss of your baby and we would like to extend our most sincere condolences to you, your family and other loved ones. Losing a baby is a very upsetting and painful experience and we hope to support you in every way we can throughout your bereavement. It is possible that it may feel too hard to take in any information at the moment, therefore we have written this booklet as, for example, something for you to look at when you feel ready to think more about what is happening.

When a baby dies, there are a number of practical things which need to be managed and we hope that this booklet will tell you everything you need to know about what to expect, and what you may need to do. This booklet also includes emotional coping strategies to support you during your bereavement and includes suggestions for how you can access further support in your local area. It has been divided into three parts. The first part will give advice on the immediate practical things that need to be done following the death of your baby. The second part will provide you with information on your feelings and emotions. The final part of this booklet offers you useful numbers and ways to access other sources of support.

We would also like to acknowledge and express our appreciation to all of the families that have helped us to create this booklet. Without your time and support we could not have achieved this.

Part one

Spending time with your baby

Having the opportunity to spend time with your baby after they have died is an important part of building memories and can be a helpful part of the grieving process. It is understandable that you may experience a range of mixed feelings about this. Every parent is different, however many bereaved parents find it comforting to spend some time with their baby after he or she has died. It is important to be guided with how you feel at the time. There is no right or wrong way to do things and you are encouraged to speak with any member of staff, who will be happy to support you with the decisions you need to make.

If and when you decide to spend time with your baby we will always try to provide you with privacy away from other families, and as much time as you would like with your baby. It is important to be aware that if your baby requires a post-mortem, we may ask you to move to the Chapel of Rest (Woodland Suite) or a cool room at a hospice in order for you to have the time that you would like with your baby.

If your baby does not have a post-mortem, you may wish to take them home to spend more time together. On these occasions, NICU staff are required to inform local authorities as part of our guidelines. Please talk to staff if this is something you would like to consider and we can help support you with this.

We understand that all families are individual and will have different beliefs, cultural and religious backgrounds. We recognise that the spiritual care of families is a crucial aspect of bereavement support and staff will always try to facilitate referrals to appropriate religious services. The chaplaincy service can offer you spiritual and pastoral care, and can also provide a religious or farewell ceremony for your baby. If you would like to contact the hospital chaplaincy, please call 01223 217769, email at cuh.chaplaincy@nhs.net, or ask any member of staff. We would like to support you to do whatever feels right for you and your family.

Building memories and moments with your baby

A member of staff from NICU will provide you with a free 4Louisbox to enable you to use for memory making with your baby and family. Other memory making services which you will be offered at no cost to you, will include:

Imprints

If you have not already had ink hand and foot prints done, then a member of the NICU team would be very happy to make this keepsake for you. The procedure is non-invasive and involves wiping your baby’s hand and feet with a special wipe and then gently pressing paper against their hand or foot. Please make any member of staff aware if you would like this to be done.

You may also wish to have clay hand and foot imprints done. The clay prints are completed free by a member of the paediatric pathology team and we will ask you to complete a consent form for the imprints. When they have been completed and are ready, which can take between 12-16 weeks, a member of the NICU staff will call you to let you know and ask whether you would like to collect them or have them sent to you in the post.

Lock of hair

Another way that some families choose to remember their baby is to keep a lock of hair. A member of staff from NICU, or Our Chapel of Rest team are able to arrange this for you. Please make us aware if this is something that you would like to happen.

Another way that some families choose to remember their baby is to keep a lock of hair. A member of staff from NICU, or Our Chapel of Rest team are able to arrange this for you. Please make us aware if this is something that you would like to happen.

Photographs

Remembrance photography is a way to capture precious moments with your baby. You may wish to have photographs of your baby with other family members or with special items such as a teddy. The NICU team are in contact with a charity called ‘Remember My Baby’ who offer free remembrance photography to all parents whose baby has died. It is run by volunteer photographers who can meet you on the NICU. Their website is: Remember my baby (opens in a new tab)

This service will provide the photographs to you on a USB stick, after 4-6 weeks. This will mean that you can chose to look at the photos in your own time. Staff will be happy to help arrange a photographer from Remember my Baby for you.

Is no one is available from Remember My Baby, then our Media Studio can also come and take photos of you and your baby if you wish.

Parent information folder

You will be given an A5 coloured folder to take home you with, this will contain a booklet and leaflet from SANDS (that provides a lot of helpful information), copies of any consent forms, information sheets about visiting the Woodland Suite, how to register your baby’s death and how to contact the family support team.

Memory Book

Here on NICU we have created a memory book where families are welcomed to write a message in it for their child. This book is kept on the NICU and will be seen by other families who have lost a baby. If this is something that you would like to do, then please tell any member of staff and we will help you to do this.

Chaplaincy

In Cambridge University Hospital chapel there is a children’s book of remembrance which is opened daily and can be seen by family and friends. If it is something you would like to write in, please talk to a member of staff. The chapel also has a prayer tree and parents and families can write a prayer to be attached onto it in memory of their baby. The prayer tree can be visited at any time and is to the left of the main entrance to the chapel. If you need to contact Chaplaincy, please call 01223 217769 or email the chaplaincy team.

Preparing to say goodbye to your baby

If you decide to say goodbye on NICU

You will have a dedicated nurse for the timeyou are on NICU and in a side room for privacy if you wish. You will be given open visiting for any family members or friends to come and visit you and your baby. The nurse caring for you baby will go through options with you for memory making and how you feel you would want to do things.

Your baby will be well looked after and always treated with dignity and respect. The following are some helpful points to think about:

• Would you like your baby to be baptised, christened, or have a naming ceremony? This can be done 24/7 by the chaplaincy team
• Before your baby is taken to the Woodland Suite or hospice, would you like to wash and dress your baby yourself or have a member of staff do this?
• What would you like your baby to wear?
• Would you like to take your baby to the Woodland Suite? This can be done by NICU staff, or yourselves accompanied by NICU staff during working hours. If you decide to to go with NICU staff, you will be taken into the Woodland Suite and from here staff there will look after your baby. If this is outside of working hours then only a staff member can take the baby but arrangements can be made for you to see your baby in the Woodland Suite the following day.

If you decide you would like to say goodbye at your local hospital, children’s hospice or home

When it comes to the time to say goodbye, you can decide if you would like your baby to be taken to your local hospital, childrens hospice or home. The Paediatric and Neonatal Transport Servce (PaNDR Team) for the region can facilitate the transfer of your baby.

Your baby will be well looked after and always treated with dignty and respect. The following are some helpful points to think about:

• What would you like your baby to wear?
• Would you like to have a toy, blanket or any other meaningful item to accompany your baby?
• Would a parent like to travel with your baby and the team?
• Who would you like to meet you at the destination?

Once your baby has died

If you would prefer for your baby to be taken to the hospice, please talk to any members of staff on NICU to look into this for you. If you decide for your baby to stay at Cambridge Univeristy Hospital, you may continue to visit and spend time with them in the Woodland Suite until they are taken to the funeral directors. If you would like to make an appointment to visit your baby in the Woodland Suitre at Cambridge University Hospital, you can do this between 10:00 to 16:00, Monday to Friday and 10:00 to 17:00, Saturday and Sunday. Please telephone the hospital switch board on 01223 245151 and ask to be transferred to the Woodlands Suite to make an appointment. If you would like a chaplain to accompany you to the Woodland Suite, please contact the chaplaincy office on 01223 217769 or via the hosiptal’s switchboard and request a chaplain.

Taking your baby home

If the Coroner is not involved, you may wish to take your baby home. There are no legal restrictions about this. You may want to transport them yourself, or you may prefer to ask your funeral director to do this for you. Please speak with your funeral director regarding the care of your baby at home.

Going home

We understand that this is a difficult and sad time for your family and we want to make it as easy as possible for you when you are ready to leave the Neonatal Intensive Care Unit. Please ask a member of staff if you would like us to accompany you as you leave the unit. Of course, it is possible to leave via the main hospital if you would prefer not to leave through the Rosie. Please ask a member of staff to validate your car parking ticket before you leave the ward.

Car park 2 or waiting bays

The main entrance/exit to the Rosie is on Robinson Way and this is the exit you should use if you are parked in car park 2 or in the waiting bays. On leaving the NICU, turn left and walk towards the lifts. Take lift A (on the right) or take the stairs down to Level 1. On leaving the lift, turn left and the exit is straight ahead of you.

Car park 1

The Rosie is also linked to the main Addenbrooke’s hospital via a ramp which leads directly to Level 2. On leaving NICU, turn left and walk towards the end of the corridor. Take lift B on your left down to level 2. On leaving the lift, turn left, through the double doors and down the ramp. Turn right into the main hospital. Walk along the corridor until you reach the main food concourse on your left. Walk through these doors keeping to the right of the concourse and follow signs to main reception. Opposite the reception desk is the main entrance/exit and from here follow signs to car park one.

The next steps

Medical Certificate of Cause of Death (MCCD)

The senior doctor who cared for your baby will complete a MCCD. You will need this document to register your baby’s death. It is advisable for you to think about whether your baby will be buried or cremated, as different paperwork will need to be issued accordingly. If you have not already been given the (MCCD) then please talk to a member of staff, or seek advice from the NICU family support team.

Coroners and post-mortem

All deaths are discussed with the medical examiner who sometimes may refer your baby’s death to the coroner. A coronor is a person who is required by law to investigate any sudden or unexplained death. If the coroner decides that your baby’s death was due to natural causes, then they will allow your doctor to issue a MCCD. If this is not possible, then the coroner may request a post-mortem examination from a pathologist to help them determine the cause of death.

It is important that you know if your baby requires a post-mortem, as this will not be carried out at Cambridge University Hospital. Instead, your baby will be looked after and transferred to another hospital that is equipped to complete the examination. The Coroner’s officer will liaise with you about this. At times there may be the need for an inquest and if this is the case, you will be kept informed by the Coroner’s Officer. The death cannot be registered until an inquest is completed, however interim certificates can be issued by the office of the Coroner.

Hospital post-mortem

A post-mortem is not a legal requirement except in a Coroner’s case. However, you can requesr a post-mortem or the doctor who treated your baby may ask for your permission to carry out a post-mortem examination to help understand why your baby has died. Although it does not always find a definite cause of death – it may still answer a few questions. Here are a few examples where a post-mortem can be useful:

• It can confirm or change a diagnosis
• It may find conditions that have not been diagnosed before
• It can exclude some common causes of death such as medical problems with your baby, infections or growth restrictions
• It can help assess the chances of problems happening again in the future

In these cases, the doctor will seek your consent and will explain what is involved to assist you in making your decision. You will be asked to sign a consent form should you wish to give permission. For more information please refer to the SANDS booklet under the section ‘Understanding why your baby died’.

Registering your baby’s death

Once you have been issued with a MCCD, you will need to make an appointment to register your baby’s death within five days. It is important to know that if your baby’s birth has not yet been registered then this must also be done when registering their death. In cases where your baby’s death has been referred to the Coroner, there may be a delay of two working days before registration can take place.

All deaths that occur in the Cambridge area must be registered at a Cambridgeshire office, usually within five days. Registration offices are located in Cambridge, Huntingdon, Ely, March and Wisbech. If the birth of your baby has not yet been registered, you will need to ask for a double appointment. The death registration is usually done by the baby’s parent/guardian, or alternatively a close relative or someone who was present at the baby’s death. An appointment must be made through the main contact office on Tel: 0345 045 1363, or you can book online for birth and death registration on the Cambridgeshire County Council website. (opens in a new tab)

It is possible to register at your local registry office and if this would be helpful please email the Cambridge University Hospital Bereavement Care Service or call 01223217537. They will be able to provide the information needed and provide any additional support with the registration process.

Documents you need to register your baby’s death

The Registrar will ask for:

• The medical certificate of cause of death
• Your baby’s name, place and date of birth
• Your baby’s place and date of death
• Parent’s full names, home address and occupations
• Whether your baby will be buried or cremated
• Funeral Director’s information if available

After you have registered your baby’s death

When you register your baby’s death, you will receive:

• A ‘green form’ Certificate for burial or cremation that you will need to give to the funeral director
• Death Certificates. There will be a charge for these and payment can be made by cash, debit, or credit card.

Exceptional circumstances

The body of your child can be released without the need for a green form or the death being registered in certain circumstances, for example, to enable religious rights and practices to take place. The Registration Service will only be contacted “out of hours” if the burial is taking place before the next working day. Please be aware that this is not always guaranteed.

Who needs to be told about your baby’s death?

You may wish to ask a family member or friend to contact these services to inform them that your baby has died. Those who need to be informed include

• Any banks that had savings accounts set up in your baby’s name
• The NICU team will inform your GP, Child Health, Health Visitor, Community Midwife and Social Worker (if applicable)

Child Death Overview Panels

After your baby dies, you will shortly receive a letter from the Child Death Review Panil (CDOP). This is normal procedure because government legislation now requires every local children’s services to review the circumstances of all child deaths aged 0-17 years. Irrespective of circumstances, they just be reviewed by a multi-agency CDOP.

The CDOP will collect and analyse information about every child’s death to identify any learning and will recommend any changes or improvements to services for children that might prevent similar deaths in the future. Any recommendations made are passed on to the organisations that are responsible for planning and managing services for children locally, as well as to other relevant agencies. Parents, family members or carers will be informed of the process and will be given the opportunity to contribute to the review and ask questions.

Perinatal Mortality Review Tool (PMRT)

The PMRT is very similar to the CDOP and a multidisciplinary team will meet to collect and analyse information about the care that you and your baby received: From your booking appointment, through your pregnancy and delivery, and care of your baby up until their death, as well as bereavement care. This will identify any learning opportunities and there will be recommendations to the trusts involved in your care if necessary.

You will be sent a letter within 2 weeks of your baby’s death to ask you for any feedback or any questions you may have, but you do not have to reply of the time is not right for you. You can contact us at any time, when you feel able. Once all the information is collected, the team will meet and discuss the findings. You will then receive an invitation to meet either in person or remotely, to discuss the report with the neonatal consultant who led your baby’s care and this will be detailing the findings, recommendations and answering any questions you have. If you would like psychology or chaplaincy support at the meeting, please let the team know and we will coordinate this for you. We do not routinely send the report out to you prior to the discussion, as we feel it is best to discuss with you first and then a copy can be sent to you if you wish.

Remembrance Service

You will be invited to an annual service of “remembering” your baby, here at Cambridge University Hospital. This remembrance service takes place every first Saturday in March for families who have lost a baby on NICU. At the service you will be invited to light a candle in their memory. We invite families for the service in March up until December of the previous year. If you have lost your baby after December, you will be invited to the service the following year. Please let the nurse know of you would not like to be added to the invite list.

Maternity and paternity leave - Babies born between 14 and 24 weeks

If your baby died before he/she was born between 14 and 24 completed weeks gestation, you will unfortunately not be entitled to maternity or paternity rights as this is medically classified as a late miscarriage. However, you will be entitled to take sick leave for pregnancy-related illness. Your employer should be able to record this separately from other sick leave, so that it does not affect your sickness record. You will still require a sickness certificate from your GP for this. You will be entitled to statutory sick pay which is paid for up to 28 weeks. Fathers and female partners may also be entitled to statutory sick pay. Partners may also be entitled to Time off for Dependants and this can be paid, or unpaid, depending upon your employer.

If your baby was born before 24 completed weeks and showed signs of life at this gestation and/or has been to NICU, this is classified as a neonatal death (NND) and your financial entitlements are same as described below:

Babies born from 24 weeks onwards and Neonatal Deaths

If your baby is born after 24 weeks but later dies, you are entitled to all of your maternity and paternity rights. If you are already on maternity leave you do not need to take any action. If the birth happens before you intended to start maternity leave, or before you gave notice of maternity leave to your employer, your maternity leave will start the day after the birth of your child and you will need to inform your employer as soon as you can.

If you have a partner who is eligible for paternity leave, he or she will still be entitled to take this if your baby is born after 24 weeks. There are time limits for completion and it may be helpful to contact the Stillbirth and Neonatal Death Charity (SANDS) (opens in a new tab). Email SANDS or call 0808 164 3332 for advice.

Child Benefit

If you have registered for child benefit, you will receive your full entitlement from your baby’s birth until eight weeks after their death. If you have not made a claim for Child Benefit, you must do so within three months of your baby’s birth in order to get the full amount. If you have made a claim for Child Benefit, you will need to report your baby’s death to the Child Benefit Office on Tel: 0300 200 3100.

A guide for organising your baby’s funeral

Many of us have little experience of death and funeral planning. Unless there are special religious or cultural reasons for holding a funeral quickly, there is no need to hurry. You can take all the time you need to make sure your baby’s funeral is a memorable and personal occasion that is meaningful to you. All babies regardless of their gestation at birth can have a funeral. However, if they dies shortly after birth or on NICU then it is a legal requirement that your baby must be cremated or buried. Some families chose to have a funeral service for their baby; however this is optional as a funeral is not legally required.

Choosing a funeral director

It is possible to make your own arrangements or to choose a funeral director to help and guide you; you may wish to telephone several directors to gain an idea of what feels best for you. You do not have to wait until you have registered your baby’s death before contacting a funeral director.

Most funeral directors are available 24 hours a day, 7 days a week and are willing to visit you in your home. They will help you to make arrangements for the funeral. They will be able to contact the hospital and arrange to collect your baby and organise any paperwork that is required for a funeral or cremation.

Once your baby is with the funeral director, you will be able to visit him or her at the Chapel of Rest there, where you can spend as much time as you need to. Sometimes, families decide they would like their baby to spend time at home, usually in the hours before the funeral. This can be arranged with the funeral director.

Financial Support for the Funeral

Most funeral directors offer a simple funeral service for babies which can be free of charge. However, it is likely that you will still be required to pay for the coffin, and any other additional items or services. If you are on a low income or are concerned about how you will be able to pay for the funeral, you may be entitled to a funeral payment from the social fund. For further information on this, please visit the GOV.uk 'Get help with funeral costs' page (opens in a new tab) or contact your local Jobcentre Plus, and/or you can also seek advice from your funeral director. When talking to any of these companies, ask about Form SF200. You can also contact the Money Advice Line on 0800 138 7777. Down to Earth is an organisation giving practical advice and support on funerals and other associated costs and you can telephone them on 0208 983 5055.

What to tell others

Some families like to tell those attending the funeral about any special requests they have, for example, if you have a favourite colour which reminds you of your baby, you could ask your guests to wear that colour. It is also helpful to let guests know about your preferences for flowers and/or donations. Some families are fine with others giving flowers; however, this is not for everyone. Often people like to send donations, and this might be an opportunity to share details about an organisation that has meaning to you and could benefit from grateful donations. To help you with letting others know, it may be useful to ask a close friend or family member to inform your guests of your preference.

How to include children in the funeral process

If you have children, or if there are children who you have invited to the funeral, it may be helpful to explain in advance what to expect at the ceremony. Let them know that there will be people there who may be upset and likely to be crying, including yourself and other close family members. Let the child know that crying is a normal thing to do at a funeral and if they want to cry too that it is ok.

Order of Service

There is no right or wrong way for how to prepare the order of service. You have the choice of perparing ir yourself, or the funeral director or friends and family can help you do this. The order of service could include the words and music which you plan to have at the funeral. Some families place photographs of their baby in the order of service, or a picture, or symbol to presents their baby. If you need advice or support in it, please contact Cambridge University Hospital Chaplaincy by email or on 01223 217769.

Suggestions for what to include at your baby’s funeral

Choosing a type of ceremony

If you and your family follow a certain religion or spiritual belief, it may be an idea to ask your religious/spiritual leader to host your baby’s ceremony. For further advice and information about planning a funeral, you can contact the Institute of Civil Funerals or Funeral Celebrants to discuss further. These organisations offer religious and spiritual advice for planning funerals. If you do not follow a religion or any spiritual belief, you can contact the British Humanist Association for advice and support and for information about your local humanist funeral services. Some families also ask a close relative or friend to lead the ceremony if they would prefer this. Some people choose to have a service where family and friends can attend, whilst others chose to attend alone.

Ways to remember your baby during the funeral

Poems and Stories

You and your family may want to consider writing or reading poems or stories about your baby. You may want to do this yourself or ask someone to do this on your behalf. If you do decide to read it yourself, it may be an idea to ask someone close to you to be prepared to take over if it starts to feel too hard to do. There are a number of poems available on the internet to help you to find the right one for your baby and the Good Funeral Guide website offers a number of suggestions. If you want to write a story about them, have a think about some moments that stood out to you the most about your baby, and whether you feel able to share this in your story with others.

Music

If you would like to use recorded music during the ceremony, check with your funeral director about what resources they have available for this. It is important to remember that your choice of music for your baby’s funeral may remind you of the day if you were to hear it again at a later date. If you choose more than one song or piece of music, it is a good idea to label them and let the funeral director know what order you would like the songs to be in, and when they should be played. Your funeral director will also be able to give you further advice on this.

Prayers (if applicable)

You may want to read certain prayers or ask someone else to read a specific prayer on your behalf. It is helpful to talk through any prayer requests with the person leading the service.

Photographs

You may want to frame a photograph of your baby and place it up at the front of the ceremony room for you and your guests to look at.

Candles

Some families may wish to have the opportunity to light candles before, during or after their baby’s ceremony. If this is something you would like to do, check with the crematorium, church or cemetery that this will be allowed.

Seeds

You could consider giving seeds to represent a flower or tree to your family and friends to plant as a way of remembering your baby.

Part two

Grieving for the loss of your baby

Emotional responses

Everyone will experience his or her grief differently from others. Some parents say that they feel a whole range of emotions as they grieve and describe it as feeling like “a roller coaster of emotions”. The death of a baby can lead to strong feelings and reactions, and there is no set time limit as to how long this will last. It is always important to know that grief can affect everyone in such different ways. Some individuals might feel a deep sadness, whereas some may feel angry, guilty, lonely, or even numb from any feelings. It is normal to go through a whole range of emotions, and these could change at any point. This is why grief can often leave you feeling confused about how you are feeling and how you are responding to things.

Some parents will have lost a twin/triplet/quad and in these situations, you may experience a whole range of confusing and conflicting emotions. For example, you might find yourself feeling any of the emotions described above, however at the same time holding onto hope of a healthy child for the baby/babies who have survived. The Twins Trust can offer guidance and support and can be contacted by visiting the Twins Trust Bereavement Service website (opens in a new tab) or phoning 0800 138 0509 or 01252 332344.

Physical responses

Grief can also affect us physically. Some bereaved parents might experience extreme tiredness, others may also have difficulties falling and staying asleep. Your sleep may feel interrupted, and it is possible that you might have nightmares or upsetting/unusual dreams. You might notice your heart rate increases, dizziness, muscle tension, chest pain and an overall sense of feeling heavy and slowed down. It is possible that you might lose your appetite or feel the need to overeat. You may also experience abdominal pain and diarrhoea or constipation. It is also possible that you might experience headaches and/or migraines, as well as muscular pain. If you are experiencing any of these symptoms and are worried the please seek medical advice through your GP, 111 service or for extreme symtpoms 999.

Some bereaved parents have noticed that their arms become painful and ache for their baby. Bereaved mothers might still feel sensations of their baby or babies kicking and moving around inside of them. It is important to remember that a mother’s body will continue to react in the same way as it would, had her baby survived. This can be extremely confusing and upsetting for mothers. Because of these physiological responses, a mother will continue to experience vaginal blood loss after the birth. Breasts may still produce milk and might become painful and tender. As the womb contracts back to its normal size, a mother may experience abdominal pain or cramping. There is a charity called, ‘Aching Arms’ which offers further support and advice about this, and you can access them via their website: Aching Arms (opens in a new tab).

Looking after yourself

It is extremely important to look after yourself in order to help you to cope and manage throughout your grief. It can take time to heal and recover from losing your baby. You might feel as though the emotional and physical pain will never leave you, and it might feel as though life no longer has any sense of purpose. Bereaved parents have shared with us that, with time, these feelings start to feel less intense. Some parents find that being able to cry and talk about their baby are helpful ways to release some of the feelings they experience. It is possible that your grief might come in waves, feeling calm one minute, to then feeling a mixture of strong physical and emotional reactions.

In order to help you manage your grief, it is important to allow yourself to cry. You might only want to do this alone, or you might want to cry with your partner, or with a close relative, friend, or even with a professional. It might be helpful talking to someone about what happened to your baby, and the more you talk about it, the better it might eventually start to feel. You could also consider writing a blog about the journey you have all been through, or you may like to join local support groups to meet other bereaved parents.

Keeping a diary or writing your feelings down can also feel useful as a way to process your grief. Even though you might want to stay away from others, going outside and having a short walk, or easing yourself gently back into social activities or exercise might help you. Of course, these things can never take away the pain you are feeling after losing your baby however, they can help you to start finding ways to live alongside what has happened.

As mentioned above, for some bereaved parents, appetite could decrease. Even though eating might not be something you want to do, it is important to maintain regular food and drink intake throughout the day. Maintaining a healthy and regular appetite will help to regulate your mood and could also help you to feel better physically.

Emotional support for you and your family

Every family’s experience of losing a baby is individual and different. Many parents say that they never knew it were possible to feel such sadness and that they feel a mixture of confusing feelings. The grief that is experienced after losing a baby often lasts much longer than most people realise. In order to help get you through this, we are dedicated to providing emotional support and information throughout your journey on NICU as well as after. This can be done through using the following services:

The NICU Family Support Team

This is a dedicated service for families on NICU and is run by a clinical psychologist and a counsellor practitioner. The NICU family support team are here to support you and your family throughout the bereavement process. Sessions are held on site at Cambridge University Hospital, or remotely if that is easier for you. The NICU family support team offer support to any family member who has been affected by your baby’s death. To access this service, please speak to any member of staff on NICU and they can refer you. Alternatively, you can contact NICU family support directly via email or you can telephone 01223 217 957.

Chaplaincy

Pastoral and Spiritual support is available from the Cambridge University Hospital Chaplaincy and the chaplains are available on-call 24 hours a day. To access this service, please ask a member of staff to contact them for you. Chaplaincy offer one-to-one support, as well as support for couples and extended family members. They can be available during your Bereavement follow up appointment. The chaplaincy can arrange a candlelight service for anyone who wishes to light a candle in memory of a baby who has died. You can contact them on 01223 217 769 or by emailing the chaplaincy team.

Siblings

The NICU family support team can offer sibling support. If you feel this would be helpful, please email NICU family support.

Bereavement packs are also available for your baby’s siblings which may help them to understand what has happened. Please ask a member of staff if you would like one of these.

Other resources

In addition to our services, there are a number of excellent bereavement support services available throughout the UK and it may be useful to think about what you might find helpful, e.g. a telephone helpline, support groups, befrienders, online forums and one to one bereavement counselling.

Part three

Useful Contacts

Local

Cambridge:

• NICU Family Support Team
  Telephone: 01223 217 957
  Email NICU family support
• Cambridge University Hospital Chaplaincy
  Telephone: 01223 217769
  Email CUH Chaplaincy
• Stars Children’s Bereavement Support Service
  Telephone: 01223 863511
• Cambridge Psychological Wellbeing Service
  Telephone: 0300 300 0055
• Cambridgeshire Sands Parent Support Group
  Email Cambridgeshire Sands

National

• SANDS (Stillbirth and Neonatal Death Charity)
  Helpline: 0808 164 3332
• Aching Arms
  Helpline: 07464 508994
• The Miscarriage Association
  Helpline: 01924 200 799
• Children of Jannah
• Muslim Bereavement Support Service (MBSS)
  Helpline: 020 3468 7333
• Child Bereavement UK
  Helpline: 0800 028 8840
• The Lullaby Trust
  Helpline: 0808 802 6868
• Hope Again (A web-based resource created by those who have been bereaved)
  Helpline: 0808 808 1677
• Bliss (For babies born too soon, too small or too sick)
  Helpline: 0808 801 0322
• Winston’s Wish (the charity for bereaved children)
  Helpline: 0808 802 0021
• The Compassionate Friends (Support after the death of a child of any age)
  Helpline: 0345 123 2304
• Samaritans
  Helpline: 116 123
• Child Death Helpline
  Helpline: 0800 282 986

Financial Support

• The Money Advice Service
  Helpline: 0800 138 7777
• Jobcentre Plus
  Helpline: 0800 055 6688
• HMRC Child Benefit
  Helpline: 0300 200 3100

Checklist

Inform staff of your preference for burial or cremation of your baby ☐

Have you received the Medical Certificate of Cause of Death (MCCD) ☐

Make an appointment to register your baby’s death in Cambridgeshire within 5 days. Double appointment booked if baby’s birth also needs registering. ☐

You will need to take:

• The MCCD ☐
• Your baby’s name, place of birth and date of birth ☐
• Your baby’s place of death and date of death ☐
• Parents full names, home address and occupations ☐
• Whether your baby will be buried or cremated ☐
• Funeral Directors information if available ☐

Received the ‘Green Form’ from registrar to give to the funeral director ☐

Have you informed any banks that had savings accounts set up in your baby’s name ☐

They are not far, they are always near,
In the memories you hold most dear,
In the hearts that still care,
In the love that goes on,
They will never be far,
They will never be gone.