Following a Bereavement
A practical guide for parents following a neonatal death
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
INTRODUCTION
The death of a baby is a very distressing and painful time. Even at this most difficult of times there are certain procedures that must be followed. This booklet aims to provide some helpful and practical advice during the early days of your bereavement.
We offer our condolences at this sad time. If we can be of any further assistance, please do not hesitate to contact us using the number below.
At the back of the booklet there are contact details of some organisations that may be able to offer you further advice and support.
Lister Bereavement Office
Bereavement Assistant – 01438 284634
An answer phone is available
The Bereavement Office is open for telephone enquiries and appointments from 9am - 3.30pm Monday to Friday (closed on Bank Holidays)
Please note: If your call goes through to the voicemail service, it is because we may be talking to another family on the phone. If you leave a message we will return your call as soon as possible.
Additional Contact Details
Lister Hospital main switchboard number 01438 314333
Chaplaincy Office 01438 285519
PALS (Patient Advice and Liaison) Office 01438 285811
Emails: pals.enh-tr@nhs.net
Hertfordshire Coroner’s Office 01707 292707
Email: coroner.service@hertfordshire.gov.uk
Hertfordshire Register Office 0300 123 4045
The Child Death Overview Panel (CDOP)
Government legislation now requires every local children’s service authority to review the circumstances of all child deaths. A member for the CDOP panel will contact you to arrange a visit shortly after the death of your baby.
All neonatal deaths, irrespective of gestation (excluding terminations of pregnancy), are also reported to The Child Death Overview Panel (CDOP). This is done by the named CDOP reporters for the hospital; most commonly this is the bereavement midwife but may also include the family support lead nurse. CDOP are groups of professionals who meet several times a year to review all the child deaths in their area. The main purpose is to learn how to prevent future deaths.
THE MEDICAL EXAMINER PROCESS
All Neonatal deaths are reported to the Medical Examiner Office to be reviewed by a Medical Examiner (ME). This must be an independent, senior doctor who was not involved in the care of your baby. We also have Medical Examiner Officers (MEOs) who coordinate the entire process of ensuring the required certificate of cause of death can be issued. You will have a named Medical Examiner Officer (MEO) who will be your point of contact throughout the process. The bereavement assistant also supports the Medical Examiner Officers (MEOs).
The Neonatal Unit will make contact with the Medical Examiner Office following the death of your baby and they will arrange for medical notes to be sent to them. The Medical Examiner (ME) will review the notes and will have a discussion with the doctor(s) responsible for the care of your baby. This is to ensure that the information entered on the Medical Certificate of Cause of Death is correct and that all information relating to the death is recorded appropriately. The Medical Examiner is NOT the same as the Coroner.
A designated Medical Examiner Officer (MEO) can explain the cause of death to you and they can answer any questions you may have about the Medical Examiner process. You will also be asked if you have any concerns regarding the care your baby received. Although the Medical Examiner Office may not be able to answer all of your questions immediately, they will advise you of sources of additional support or information.
MEDICAL CERTIFICATE OF CAUSE OF DEATH (MCCD)
If the cause of death is known and the death is expected, this certificate will be completed by the hospital doctor who attended your baby. This can only be done following a discussion with the Medical Examiner.
To enable the Medical Certificate of Cause of Death (MCCD) to be completed, Medical Examiner Officers (MEO) must follow a standard procedure.
Please be aware that this process may take a few working days, depending upon circumstances.
The Medical Examiner Officer (MEO) will contact the doctor and ask them to come and complete the Medical Certificate of Cause of Death (MCCD). Doctors are not always able to attend immediately when requested but you will be kept informed of any unavoidable delays.
On completion of the Medical Certificate of Cause of Death, the Medical Examiner Officer (MEO) will email it to the Hertfordshire Registration Service. The Medical Examiner Officer (MEO) will also provide Hertfordshire Registration Service with your contact details so that they can call you to arrange an appointment to attend one of the local offices to complete the death registration of your baby.
PHOTOGRAPHY
Before you go home you will be asked if you would like your baby photographed. If you agree you will be asked to sign a consent form.
Your baby can be photographed in his or her own clothes or we can provide hats, clothing and blankets if wished.
You may wish to have photographs taken of you and your baby together. The Department of Clinical Photography are happy to do this for you.
Once the photos are ready, one of the bereavement team will call you to let you know that they are ready to collect.
You will be provided with a small selection of 6x4 images which are presented in a white card mount. Photographs may be a selection of both colour and black & white. The Department of Clinical Photography and Illustration (DCPI) can also size photographs to fit any personal frames or lockets and the images will also be put on to an encrypted USB drive.
Should you wish to have additional copies of your photographs, these can be provided at minimal cost. Please either inform the bereavement team or contact the DCPI directly on 01438 284019.
If you are not sure if you want photographs, they can be taken and kept as part of your hospital records in case you wish to see them in the future. Photographs can be made available to you up to 25 years after they were taken.
KEEPSAKES
Keeping mementos of your baby may provide some comfort to you. We can provide these for you at your request. Some of the keepsakes we can provide are:
• Hand and foot prints
• Hand and foot impressions
• Photographs
• Lock of hair (if appropriate)
• Name Bands
• Umbilical cord clip (if available)
• Cot Card
Please inform the nurse if you would like some of these keepsakes and they will arrange for them to be taken. You may also be offered a memory box on the neonatal unit. If you do not wish to take your keepsakes immediately they can be kept in the bereavement office until you feel ready to have them.
SEEING YOUR BABY
Sometimes parents find that saying goodbye to their child is an important part of the grieving process. This is a personal choice to be made by you and there will be no pressure on you if you do not wish to do so.
Viewings can be arranged with the bereavement & mortuary department during working hours (Monday to Friday, 9am – 3.30pm or outside of these hours by contacting the nurse looking after you (who will be able to contact the on call mortuary team). Please be aware that it may not always be possible to arrange a viewing out of hours but the mortuary team will do their best to accommodate you where possible.
Viewings take place in the bereavement viewing suite where up to 4 immediate family members may attend. You are welcome to bring in items that you may wish to leave with your baby, please discuss this with the bereavement and mortuary team, we will ensure that anything left with your baby stays with them at all times.
RELIGIOUS AND SPIRITUAL NEEDS
The Spiritual and Pastoral Care Team is available at any time of the day (and at night in an emergency) to offer emotional, spiritual or religious support. Our team includes Chaplains from a variety of faith and belief communities. Currently these are Buddhist, Christian (Anglican, Roman Catholic, Pentecostal) Hindu, Humanist (non-religious), Muslim and Sikh. The team also have contacts with a variety of people from other faiths and traditions including most other Christian denominations, locally who we can contact for support.
We are here to offer you whatever support we can, whatever you need, whatever your beliefs – whether these are religious or otherwise.
We can
• Sit with you in your pain of loss
• Hear about your baby and their story
• Listen to what might be of comfort to you
• We can talk about any rites or rituals that may provide comfort
• We can offer prayers or a blessing for your child, including a humanist one, if you have no faith
• And if you ask, we can try and contact your own faith leader in the community for you
We do not assume to know what you need.
We do not impose our beliefs.
We are here to listen and to serve.
Please contact us on 01438 285519
POST MORTEM EXAMINATION
In the case of an unexpected and unknown cause of death, it is a legal requirement to refer the death to the Coroner. In the majority of cases this will lead to a Coroner’s post mortem examination being requested. The Medical Examiner Office will arrange the referral to the Coroner after a discussion with the doctor who attended to your baby in the hospital.
Where the death was expected, such as in the case of a life limiting illness; a consented or hospital post mortem may be able to answer any questions that you have regarding your baby’s condition or provide further information.
Any examination will take place at a hospital that specialises in paediatric post mortems.
Many families find post mortems helpful because they can provide important information about how a loved one died. Understanding the reason for the death of a baby can often help families come to terms with their loss.
The Post Mortem Process
The post mortem will take place at a specialist hospital for paediatrics, usually within 1-3 weeks. Your baby will be transferred to the specialist hospital by our contracted funeral directors and will usually be returned to the Lister Hospital once the examinations are completed.
CORONER’S POST MORTEM
A Coroners post mortem is an examination that is required by the Coroner. The Coroner is responsible for investigating deaths and does not need consent from the family.
If your baby died unexpectedly or unnaturally, the hospital doctor looking after them must, by law, refer the case to the Coroner. The Coroner will request a post mortem examination.
If this is the case the post mortem is a legal requirement and you will not be asked for consent; you will however be asked for your consent to take small tissue samples, as with a hospital post mortem.
The Coroner’s officer will contact you to explain the procedure and to make sure you understand why the post mortem has been requested. The Coroner’s office will contact you again once the post mortem is complete, with the preliminary results and they will also issue the documentation allowing you to register your baby’s death and hold the funeral. This process can take between 2-3 weeks depending on the circumstances.
HOSPITAL POST MORTEM
A hospital post mortem is an examination that is not required by the Coroner, but is carried out at the request of either the family or the hospital doctor to provide information about an illness or cause of death. This type of post mortem cannot take place without the consent of the next of kin. Some parents want a hospital post mortem, others may not be sure. It is your decision (except in a Coroner’s case).
The doctor or neonatal nurse will ask you if you wish to consider a post mortem. The doctor will go through the consent form with you and there will be opportunities for you to ask questions and make sure your preferences are noted.
Some questions you may wish to ask about the post mortem examination are:
• When it might be carried out
• Where it will take place
• How long it will take
• When the results will be given to you, and who you can discuss them with
• When and from whom you can get a copy of the results
Once the consent has been taken, you will be given a 24 hour ‘cooling off’ period to change your mind should you wish to do so.
As part of the post mortem process, small samples of tissue from the organs may be taken for more detailed examinations under a microscope. With your agreement these tissue samples will be kept as part of your baby’s medical record. This is so that they can be re-examined to try to find out more if new tests or new information become available. If you do not agree to this, all tissue samples will be returned with your baby after examination.
The results can take between 6-10 weeks depending on the type of examination you requested and consented too.
Once the post mortem results are available, your Consultant’s secretary will arrange a follow up counselling appointment during which the results will be discussed with you. Present at this meeting will be your Consultant and the neonatal family worker.
If you have any further questions about the post mortem examination, the doctor, neonatal family support worker or one of our bereavement team will be happy to answer these for you.
REGISTERING YOUR BABY’S DEATH
To register the death, the doctor must have issued the Medical Certificate of Cause of Death (MCCD) first, which will be emailed to the register office. Your contact details will also be provided to the Registration Office as they will telephone you to make an appointment for you to visit one of the Hertfordshire Register Offices (listed under the section Registration Office Information).
When there has been Coroner’s involvement in the death, the Coroner will issue the required paperwork to Hertfordshire Registry Office.
Deaths are normally registered in the county in which they occur. However, if for any reason you are unable to attend the local area where the death occurred, this can be discussed with the Register Office when they contact you.
When you attend your appointment the registrar will give you a Death Certificate, there is a small fee for these. The registrar will also give you a green form to permit burial or cremation. This should be given to the funeral director or, if the hospital is arranging the funeral, to the hospital.
If you have not yet chosen a name for your baby but wish to add one after registration, this will be possible but please bear in mind that the name you choose to add will be entered into section 17 of the Certificate of Death and not in the Forename section. You will need to make an appointment with the registry office to make any additions to the certificate and there will be a charge for this.
Please Note: For unmarried couples, the father may register the death by himself as long as he has parental responsibility. Further information is available on the website www.gov.uk/register-a-death
REGISTERING YOUR BABY’S BIRTH
In some circumstances, if your baby has died very shortly after birth, it may be necessary to register your baby’s birth at the same time as registering their death. You don’t need any paperwork for the hospital to register the birth as the hospital will have already notified the register office automatically. The registrar will give you a short Certificate of Birth free of charge, if you want a full Certificate of Birth, which is a certified copy of the complete entry in the register, there will be a small fee.
Stevenage Register Office
Opening Times
Mon: 9am – 5pm
Tue: 9am – 5pm
Wed: 9am – 5pm
Thur: 9am – 5pm Fri: 9am – 4pm
Closed for lunch 12:30pm – 1:30pm
Address: Danesgate House, Danesgate, Stevenage, SG1 1WW
Tel: 0300 123 4045
Hertford Register Office
Opening Times
Mon: 9am – 5pm
Tue: 9am – 5pm
Wed: 9am – 5pm
Thur: 9am – 5pm
Fri: 9am – 4pm
Address: County Hall, Pegs Lane, Hertford, SG13 8DE
Tel: 0300 123 4045
Hatfield Register Office
Opening Times
Mon: 9am – 5pm
Tue: 9am – 5pm
Wed: 9am – 5pm
Thur: 9am – 5pm Fri: 9am – 4pm
Address: 19b, St. Albans Road East, Hatfield, AL10 0NG
Tel: 0300 123 4045
Bishop’s Stortford Register Office
Opening Times
Mon: 9am – 4pm
Tue: 9am – 4pm
Thur: 9am – 4pm Fri: 9am – 4pm
Closed for lunch 12:30pm – 1:30pm
Address: Riverside House, 2 Hockerill Street, Bishop’s Stortford CM23 2DL
Tel: 0300 123 4045
Watford Register Office
Opening Times
Mon: 9am – 5pm
Tue: 9am – 5pm
Wed: 9am – 5pm
Thur: 9am – 5pm
Fri: 9am – 4pm
Closed for lunch 12:30pm – 1:30pm
Address: 31 Hempstead Road, Watford WD17 3EY
Tel: 0300 123 4045
Hemel Hempstead Register Office
Opening Times
Mon: 9am – 5pm
Tue: 9am – 5pm
Wed: 9am – 5pm
Tel: 0300 123 4045 Thur: 9am – 5pm Fri: 9am – 4pm
Closed for lunch 1pm – 2pm
Address: The Forum, Marlowes, Hemel Hempstead, Hertfordshire HPI 1DN
St Albans Register Office
Opening Times
Mon: 9am – 5pm
Tue: 9am – 5pm
Wed: 9am – 5pm
Address: The Gatehouse, 1, Victoria Square, St Albans AL1 3TF
Tel: 0300 123 4045 Thur: 9am – 5pm Fri: 9am – 4pm Closed for lunch 12:30pm – 1:30pm
Cheshunt Register Office
Opening Times
Mon: 9am – 4pm
Wed: 9am – 4pm
Tel: 0300 123 4045 Fri: 9am – 4pm
Address: Bishop’s College, Churchgate, Cheshunt, EN8 9XH
TAKING YOUR BABY HOME
Some parents decide to take their baby home before the funeral. There is no legal reason why you should not do this unless the Coroner has ordered a post mortem.
How long can I keep my baby at home?
This depends on your baby’s condition and the temperature of the room in which he or she will be kept. A maximum of three days is advisable, unless there is a post mortem examination due.
If you have agreed to a hospital post mortem, you can still take your baby home but you will be asked to bring him or her back to the hospital after about 24 hours. This is because the sooner the post mortem is completed; the more chance there is of finding out why your baby died.
If you want to take your baby home, please let the neonatal family support worker know and they can liaise with the bereavement team.
If you decide to take your baby home you be will asked to sign a form confirming that you are taking responsibility for your baby whilst at home and that you will either bring him or her back to the hospital for the funeral or arrange the funeral yourself.
We have a portable cooling system available for parents to borrow from the bereavement office.
You will be given advice on how to keep your baby cool and told about changes that may occur in our baby’s appearance. You will be advised that your baby’s skin may be fragile and in this case, when holding your baby, it may be best to place him or her on a pillow and hold the pillow.
You may want to consider these changes when deciding how long to have your baby at home.
