After the death of your baby

Our condolences

We would like to offer our sincere condolences on the sad loss of your baby. Losing a baby is one of the most painful things a person can experience. We know from talking to other families who have experienced such a difficult loss, that there are a variety of things which you may want guidance and support with both practically and emotionally.

This leaflet has been put together with input from other families, and staff at the Leeds Children’s Hospital. It will hopefully help you with the days and weeks ahead, including arranging the funeral of your baby, guidance on legal processes that have to happen and where you may be able to get support for yourself and your family. We hope the information that is available will help you find the support you and your family needs.

Every loss is so personal; we just wanted to share with you a message from a mother who has sadly had the experience of losing her baby.

Message from Carrie; mum to Charlie

“I just wanted to say that I am so sorry for your loss. Leaving the hospital without my little boy was the hardest thing I have ever had to do. I know that you will be facing one of the most difficult periods in your life. I was lucky that I had my family around to support me but I know that not all parents have that. No one can take away your pain but there is support available for you and your family through this difficult journey.”

What happens next?

Other families have said how difficult it can be to hear their baby being talked about in terms of medical and legal processes. We appreciate this can be incredibly hard but sadly there are processes that legally have to be followed and we want to offer as much information as we can so you feel you as informed as you want to be.

Please be aware that we mention the Coroner several times in this leaflet. The Coroner is a legal professional who is involved in reviewing certain deaths. If the Coroner will be informed of your baby’s death, the doctors at the hospital should already have discussed this with you.

Role of the Coroner

If the death of your baby is sudden or unexplained then legally the Coroner will be informed and the Police may be involved. This may involve the need for a post mortem to find out why your baby died. It also means that getting a cause of death and death certificate may be delayed.

If the Coroner is involved you should receive a named person who will be in touch with you when they have information. This is someone who is based in the Coroner’s office and will generally get in contact by phone once further information is available.

Further details on the Coroner’s process are available online, although the following document is lengthy.

Post Mortem Examinations

A post mortem is a thorough examination of the body of someone who has died. This is usually carried out in order to get more information about what may have caused the death.

• If a Coroner requests the post mortem, parents are not able to decline this. Reports can take anything between 6 and 12 months to be finalised and the Coroner’s office will contact the family by phone to share the result.
• The hospital may ask your permissions for a post mortem examination to be carried out. If this is the case, a specialist nurse will discuss this with you and you will be provided with separate information on what exactly is involved. In this instance you have the choice as to whether to consent to this. The final report is usually available between 3 and 6 months and the doctor who requested this will offer to meet the family to discuss the findings.

Seeing your baby

If your baby has gone to the Hospital’s Mortuary, you are able to come and see them in the Chapel of Rest. It is important that you telephone us in advance to make arrangements to do this.

We try to be as flexible as we can in accommodating these requests, but there may be some times when we are unable to arrange for you to go to the Chapel, or can only let you stay there for a short time.

If your baby is transferred to the funeral home, you will be able to visit them there.

The next steps

For some families dealing with the practical things that have to be done is incredibly difficult, for others it acts as a focus. We have included some of the main things you will need to do in the days and weeks following the death of your baby.

The legal process

Medical Examiner

An independent Medical Examiner scrutinizes all deaths that do not require Coroner’s investigation. They will contact you to give you the opportunity to ask questions, seek clarification or raise concerns regarding the care you and your baby received. They will ensure the Medical Certificate of Cause of Death is completed as accurately as possible. They can be contacted on: [email protected]

They will then send the completed Medical Certificate of Cause of Death to the register office.

Registering your baby’s death

The Registrar will contact you to arrange an appointment to register your baby’s death. Legally, the death must be registered within 5 working days if the Coroner is not involved. At the appointment you will need to give:

• Parents’ full names, dates of birth, home addresses and occupations
• Baby’s full name, date and place of birth, and home address

If you have not yet registered their birth, this can be done at the same appointment. Let the Registrar know if you need to do this when you speak with them so they can book in a longer appointment.

Once the death is registered, you can purchase a death certificate for a cost of approximately £12.50. After registering, the ‘green form’ will be issued, which is the permission form for burial or cremation to take place. This form needs to be given to the funeral director.

If the Coroner has to be involved in a review of the death of your baby, it may take some time before this certificate is issued.

In Leeds, deaths can be registered at:

Leeds Registry Office,
Merrion House,
Merrion Way,
LS2 8BB

Tel: 0113 222 4408

There are more local register offices based at Armley, Chapeltown, Dewsbury Road, Garforth, Harehills, Middleton, Morley, Otley, Pudsey, Rothwell, Wetherby and Yeadon. You can request to register in a more local register office when they call you.

If you do not live in Leeds, it is possible to declare the death at a local register office; however the local office will then formally register the death with the Leeds office, which delays the process slightly. The Registrar can give specific information regarding this.

Arranging your baby’s funeral

A funeral is an extremely personal experience and each family will have different ideas of what they would like to happen. You may find that speaking to your own family and friends is helpful – on the other hand conflicting opinions can also be frustrating so try to be clear on what is best for you.

There is no legal requirement to make funeral arrangements quickly, although some families will have religious or cultural reasons for wanting the funeral to happen as soon as possible.

Hospital-arranged funeral

Let us know if this is your choice and arrangements will be made by the bereavement office, who will contact you with more details.

Privately arranged funeral

You will need to appoint a funeral director who will arrange to bring your baby to the funeral home, or place of your choice. If you do not know of a recommended funeral home.

The National Association of Funeral Directors can advise you of services available in your area and can be contacted on 0845 230 1343. The hospital’s bereavement office can also give you information and advice on 0113 206 4162 at St James’ Hospital or 0113 392 3560 at Leeds General Infirmary.

You can opt for a hospital arranged funeral or arrange the funeral yourself.

You can also look at ‘Funeral Map’; a website which provides independent advice on the things you need to know in order to arrange a funeral, along with easy to find contact details for the various organisations and services you will need to call upon at this time. You can also search for funeral directors in your area.

Financial Assistance

The Children’s Funeral Fund can help to pay for some of the costs of a funeral for a child under 18 if the funeral is taking place in England.

The fees can be claimed directly by the burial or cremation provider so you should not be charged. Your funeral director should be able to guide you through this and there is more information online.

If you receive benefits you may be able to apply for help towards the costs of the funeral from the Department of Social Security. In order to apply, you need to complete DSS form 200 and discuss your claim with your funeral director and someone from your local Social Security office.

There is also the Child Funeral charity who you can be referred to who may be able to fund other elements of the funeral that are not covered by the government fund. More information is available on their website.

National Reviews

The Perinatal Mortality Review Tool (PMRT)

Whenever a baby under 28 days dies in hospital, the team involved in the baby’s care meet and use the PMRT to ensure there is a full understanding as to why they died. Over the next few months a review will take place with the obstetric and neonatal teams and any others involved in your baby’s care. Your bereavement nurse will contact you to collect your thoughts and opinions to share at the review and they will ask any questions on your behalf. You will then be invited back to meet with your consultant to discuss the PMRT and findings from any other investigations.

Further information about PMRT can be found on this website.

The Child Death Overview Panel

The Child Death Overview Panel (which is also known by its abbreviation as ‘CDOP’) consists of many organisations and has a legal duty to review the death of any baby or child in the UK. They usually contact families about a month after a death to explain their processes and provide information on their role. Families do not attend the panel and all information about your child is anonymised.

Further information about the panel can be found on this website.

Help for you

Knowing how you may feel

Parents and carers may experience a variety of emotions. Coping with the death of your baby takes time. It is common to feel at times entirely overwhelmed by the grief you are experiencing. Many parents describe being completely exhausted or unable to concentrate on even simple tasks. Some will shed many tears, others will never cry. Some experience anger, guilt, relief, emptiness or none of these things. Some may simply go on behaving as if nothing has happened.

So there is no right or wrong way to grieve and nor is there a time limit for the grieving process, even if others may try and tell you that there is. Your experience is unique to you and it is possible that others around you will grieve differently at different times and that, too, is “normal”. How you feel will probably change from moment to moment in the early days, then change from day to day in the coming weeks and months. This is also normal.

Everybody should be allowed to grieve in their own way and at their own rate. This can be especially difficult if you and those around you, including a partner or family members, experience grief in a different way, as your relationships may feel strained and distant during an already painful time. If you have other children this may help a little as you focus on what they need, but it can also be hard to cope with their grief and their needs when you are grieving yourself.

Right now it may be hard to know what will help, and again this is normal. There is a range of support available and what is important is for you to find what works for you. You may find that speaking to your own family and friends is helpful. Speaking to previously bereaved parents may also help. Some people find religious or spiritual support beneficial, whether or not they follow an organised religion.

In time, you may also wish to consider formal bereavement counselling, or to use support groups or charities such as those listed at the end of this leaflet.

If you have other children

You and your children may need different support depending on their ages and what other family support you have.

Just like adults, a child’s grief can change from moment to moment. How they feel, the fears they may have and the support they need will vary. There are several charities listed at the end of this leaflet that can help you in supporting yourself and your children.

If you have children at school or nursery, the hospital could tell them for you if you wish. When you are ready, you can contact the school or nursery to talk about how they can best support your child in school.

If you work or study

You will be entitled to maternity and paternity leave following the death of your baby. Additional time such as compassionate leave will depend on your employer. After then it will probably be sick leave.

If you are studying at College or University they will have guidance as to what you need to do to take time off.

Each person will be different in how they want to deal with going back to work or returning to study. You need to do what is right for you. If you feel you need to take extended time off, talk to your GP as soon as possible. They will be able to talk to you about the provision of a sick note.

Support for you and your family

There are details at the end of this leaflet with local and national organisations that can offer you support and help in the coming days, months and even years. They range from online information and helplines to individual counselling.

It is important that you find something that works for you when you need it. Everyone’s experience will be different so a broad range of support that is available is included.

Financial entitlements

You may be eligible for maternity/paternity leave and maternity/paternity pay/allowance.
Child Benefit is payable for the period following a live birth until eight weeks after your baby died. This claim must be made within three months of the birth of your baby. Visit gov.uk or call 0300 2003100.

More information on this and other financial support you may be entitled to can be found on the Money Helper website.

Useful Contacts at the hospital

We have tried to give you information that may hopefully help explain a few of the process that may happen and the wide range of emotions that you may feel. We haven’t covered everything and you may have further questions. The following section identifies some of the organisations which may be able to help you.

Bereavement support organisations

Checklist

We thought it might be helpful to provide a short ‘checklist’ of the most immediate things that need to done now (if the Coroner is involved, they will guide you through this stage):

• The Medical Examiner will call you so they can finalise the Medical Certificate of Cause of Death. They will send this to the Register Office.
• The Register Office will get in touch. Make an appointment at the register office within five working days. If you have not yet registered the birth of your baby you will need to ask for a double appointment.
• At the register Office, you will be given the ‘green form’ which you need to give to the funeral director.

Funeral arrangement options:

• For a hospital-arranged funeral, make an appointment with the hospital bereavement office.
• If you wish to make your own arrangements, contact a funeral director.