When a baby dies - candle with lights in the background

We hope that this page can help explain what you might experience now and in the future, in terms of practicalities.

Along the way, you will find bereaved parents who have shared their experiences. Although no baby was ever like your own, and no two losses are ever the same, the contributing parents hope their words may be of some help to you in the isolating experience of grief.

You may wish to read this information immediately or you may wish to glance at the headings and keep it for later. Be sure to take your own time. It could also be helpful to share this information with others to try to help them understand what you may be feeling.

We extend our deepest sympathies to anyone affected by the death of a child. If you would like copies of this information, you can order our booklet from our shop or download it here.

What is ‘sudden infant death’?

‘Sudden Infant Death’ is the term used to describe the sudden and unexpected death of a baby or toddler that is initially unexplained. The usual medical term is ‘sudden unexpected death in infancy’ (SUDI).

Some sudden and unexpected infant deaths can be explained by the post-mortem examination revealing, for example, an unforeseen infection or metabolic disorder. Deaths that remain unexplained after the post-mortem are usually registered as ‘sudden infant death syndrome’ (SIDS). Sometimes other terms such as SUDI or ‘unascertained’ may be used.

‘Cot death’ was a term commonly used in the past to describe the sudden and unexpected death of an infant. It has largely been abandoned, due to its misleading suggestions that sudden infant death can only occur when a baby is asleep in their own cot, which we know to be untrue.

What happens immediately after a sudden and unexpected death

We understand that the time immediately following the death of a baby can be deeply distressing. We hope these notes may help explain some of the procedures, as there are some important decisions to be made.

Always feel free to call our bereavement support helpline if you feel we can be of some support over the coming time. You can call us on Freephone 0808 802 6868 or email support@lullabytrust.org.uk. Our Helpline is open 10am-5pm Monday to Friday and 6pm-10pm on weekends and public holidays.

Once your baby has been taken to the hospital, a doctor or other health professional must confirm formally that your baby has died. If they do not know the cause of death, they must inform the Coroner (or the Procurator Fiscal, in Scotland).

The hospital staff may take some blood and tissue samples and they should also offer you a keepsake of your baby such as a lock of hair, or a hand or footprint. It is ok to ask for this if they don’t raise it with you.

A photograph of the whole family can be arranged and may be especially of value to brothers and sisters as they grow up, or are subsequently born into the family.

Going home without your baby can be extremely difficult for parents, so take your time to leave the hospital, and try to have a loved one or friend to go home with.

The post-mortem examination

Coroners inquire into all sudden and unexpected deaths to establish the cause and circumstances of the death. The Coroner will arrange for your baby to be taken to a mortuary where a specialist paediatric pathologist can carry out a post-mortem examination.

This may involve your baby being taken to another city where a specialist children’s hospital can offer such a facility. The Coroner does not require your permission for this but should explain the process to you. Many families find this separation from their baby very difficult, but your baby will receive respectful care from a specialist paediatric pathologist.

A post-mortem examination is a careful external and internal investigation of the body to try to discover why your baby died. In approximately half of cases, the reason for your baby dying may be found during the post-mortem. Even if no cause of death is found initially, it is possible that, as medical research advances, further examination of even small amounts of retained tissue could eventually provide an answer.

The post-mortem examination may help the Coroner decide whether an inquest is necessary. You, or a doctor acting on your behalf, are entitled to ask the Coroner for a copy of the pathologist’s post-mortem report. You may wish to ask a paediatrician to go through the report with you. You can request your own copy of the report but you may be asked to pay a fee for this.

When the post-mortem examination is completed, you should be able to organise a funeral for your baby, though the detailed results of the post-mortem may not be available for several weeks. You may be asked whether you plan a burial or cremation so that the correct documentation can be prepared. If you are not sure at this stage, you can inform the funeral director of your choice later on.

Common terms

The formalities that take place after a baby dies can be complicated, and at times you might hear words that you’re not sure of. Always ask for clarification if you don’t understand what someone is telling you.

  • Coroner: A coroner is a doctor or lawyer, or sometimes both. They are a judicial officer who inquires into all sudden, unexpected or unnatural deaths.
  • Inquest: The formal inquiry of the Coroner to confirm who has died, the circumstances and decide if a cause of death can be established.
  • Paediatrician: A doctor who specialises in treating children. The paediatrician is usually one of your key contacts.
  • Pathologist: A medical doctor who conducts the post-mortem examination.
  • Metabolic Disorder: A genetic condition affecting the chemical and physical processes of the human body (the metabolism).

You can also call our bereavement support helpline if you have any questions about something you’ve heard.

Tissue retention

As part of the post-mortem examination, the pathologist will take small samples of tissues (smaller than a postage stamp), which are then put into slides. These may need to be kept for a while longer for testing.

Once the post-mortem tests are complete, you must be asked what you would like to be done with the samples. There are three options:

  • for the tissues to be kept so they could be tested in the future or used for research;
  • to allow the hospital to respectfully dispose of them;
  • or have them returned to you.

Some parents have found great comfort in knowing their baby’s tissues might help research, or that future medical advances may give more answers, so do make sure someone explains the options to you carefully.

It is very rare for whole organs to be kept for additional tests, but should this happen this will be explained to you.

Care of your baby after the post-mortem

You may have been able to hold your baby at home or in the hospital before he or she was taken to the mortuary. After the post-mortem examination, and once the death certificate is issued, you may choose how and where you wish to care for your baby before the funeral.

Many families choose to visit their baby at the hospital or funeral director’s premises. Others choose to have their baby at home for a few hours or days before the funeral, which can be a helpful opportunity, for some families, to say goodbye in familiar and loving surroundings. You may like to invite a representative from your faith to say a prayer or give a blessing.

Ask the healthcare professional or funeral director about any ways in which your baby’s appearance may have changed, or about any visible signs of the post-mortem examination (usually only visible if you choose to undress your baby).

Your baby may feel different to touch and hold as a result of natural changes after death. It is helpful to know what to expect, so if necessary you can describe to any other children how their brother or sister may look or feel.

Registering your baby’s death

If no inquest is needed, the Coroner will send a pink form to the local registrar stating the cause of death of your baby. You can then formally register his or her death which, legally, must be done within five days (though can be extended under certain circumstances).

The Coroner’s Officer or another official will advise you where and when to register. You will need to take your baby’s birth certificate with you and register your baby’s birth if you have not already done so.

The Registrar will provide you with:

  • One certified copy of the Death Certificate (you may buy extra copies for a small fee).
  • A green form, which enables a burial or cremation to take place.
  • A certificate for the Department of Work and Pensions if you are applying for a funeral payment.

Funeral arrangements

It is up to you and your family how you wish to honour your baby’s life. Some services that you may like to consider include the following:

  • A service at your own place of worship and burial in your local cemetery.
  • A service at your own place of worship or at the crematorium, and then a cremation.
  • A non-religious ceremony. This can be arranged by you, by family or friends or by organisations including The British Humanist Association.
  • A service, religious or not, in your own home.
  • A service of thanksgiving sometime after the funeral.

Costs of a funeral

Charges can vary, so ask for a written estimate before completing your arrangements. Some funeral directors provide funerals for babies free of charge (this means covering the basic costs such as a coffin and transport).

If you are on a low income, you may be eligible for a Funeral Payment from the Social Fund. For more information, see the Gov.uk website here or speak with your Funeral Director.

Choosing a funeral director

Arranging a service with a sympathetic funeral director can be a big help. You may choose any funeral director, not necessarily the one who took your baby to the mortuary, if this were the case.

The advice of a representative of your faith or another informed person may help you, and you may also wish to consider alternative forms of non-religious service.

You can find funeral directors in your local area by contacting the National Association of Funeral Directors on 0845 230 1343.

Burial or cremation services

Your faith representative or funeral director can help you decide whether to have a burial or cremation. You might like to ask what rights you will have concerning ownership of the burial or cremation plots, what type of memorial will be allowed such as a headstone or plaque, and the costs.

You can discuss the choice of songs, hymns, music, readings and poetry for the ceremony with family, friends and those helping with the service. These decisions can be upsetting to make, so be sure to give yourself enough time to make the choices that are right for you.

The ashes

If you choose a cremation, it should be possible for the crematorium to provide ashes following the cremation, though not all can do this. It would be advisable to ask in advance and, if necessary, ask for details of another crematorium that can.

You can choose to have the ashes:

  • Placed in the crematorium garden of remembrance
  • Placed in another crematorium, or a favourite place with the land owner’s permission
  • Buried in a local churchyard, cemetery, or any other meaningful place
  • Scattered at a special place of your choice.

If you wish to arrange for the committal of the ashes on the same day as the cremation, this should be possible if the cremation is held in the morning.

Some families choose to keep the ashes at home with them. Again this may be a very difficult decision, so take as much time as you need in making it.

Other children

It can be helpful to involve brothers and sisters in the funeral, however young they are, so that they can share in the ceremony and say goodbye. A member of your family or a friend could be asked to help care for them at the funeral, and it’s generally best to give children simple, straightforward explanation about what is happening.

It is also important to let the school know about the funeral and death of their baby brother or sister, so they can provide support and monitor any emotional or behavioural changes.

Memorials

Many places of worship and some hospitals have a Book of Remembrance in which you may wish to have your baby’s name inscribed.

If you wish to have a headstone or memorial plaque, seek advice from your funeral director and ask for estimates. There are regulations concerning the types of memorial stones allowed in cemeteries.

You may like to plant a tree or bush or have some other form of permanent memorial to your baby. You could consider planting it in a large pot, so that you can take it with you if you move home.

You may want to keep your own memory box or a memory book, containing items that help you and family members commemorate your baby’s life.

If you have other children, drawing pictures of the whole family together and framing them can be a special tribute you can all see every day.

You may also like to include a memorial to your baby on our website. You can leave a poem, photograph or just a few words about your baby, which other parents and visitors to the site will be able to see.

The inquest

An inquest is an inquiry to confirm who has died, when and where, and to further establish the cause of death. The inquest is a medical inquiry and does not set out to establish guilt or blame, or comment on any person’s actions in relation to the death. The majority of sudden infant deaths will have an inquest.

If no medical or other explanation has been found through the postmortem examination, the Coroner will confirm the cause as SIDS or SUDI. Many parents tell us they feel disappointed with this outcome, as they hoped that the inquest would provide a ‘proper reason’ to explain why their baby died, but this is very often not the case.

If the Coroner decides to hold an inquest you will be told the date, time and place. The Coroner may issue an order allowing burial or cremation before the inquest is completed, as often inquests can take some time.

Inquests are open to the public, so you might like to take a family member or a friend to support you at the inquest. Sometimes the media can be present at an inquest, which can come as a shock. You are not obliged to speak to the media. You do not have to attend unless you are called as a witness.

You can ask questions at the inquest and you might like to write down these down before you go. Professionals like a police officer, paediatrician, pathologist or health visitor may be present.

You may find it helpful to talk with The Coroners’ Courts Support Service (CCSS). They are a registered charity whose trained volunteers give emotional and practical support to bereaved families and other witnesses attending an inquest. They can take you to the Court before the proceedings start and explain how an inquest is conducted. To find out in which Coroners’ Courts the service is available, visit the Coroners’ Courts Support Service website or phone 0207 802 4763.

The Child Death Review

All child deaths are now reviewed by specialist Child Death Review Panels. These Panels look into every child death to try and prevent future deaths and improve support.

The process should be explained to you by a professional, but call our Helpline if you have any questions on 0808 802 6868, or email support@lullabytrust.org.uk. Our helpline is open 10am-5pm Monday to Friday and 6pm-10pm on weekends and public holidays.

Financial arrangements

Unfortunately, there are financial practicalities to attend to during this difficult time. You may like to focus on these after the funeral when some time becomes available to you, and perhaps you could ask a friend or family member to help you.

Here are a few things you need to know:

  • It will be necessary to inform your Child Benefit Office about your baby’s death. You can phone the Child Benefit Helpline on 08453 021 444. The Child Benefit Office will let other parts of HM Revenue & Customs (HMRC) know, so you only have to get in touch with HMRC once. You should be eligible for a Child Benefit for 8 weeks after your baby has died. If your baby dies before you’ve claimed Child Benefit, you should still be able to claim.
  • If you have been employed, you should still be entitled to statutory maternity or paternity leave and pay. It may be that you do not have to return to work for a year after your baby was born, although some of this leave may be unpaid. Your employer may offer extra maternity benefits that still apply even if your baby has died.
  • If you opened a savings account or a Trust Fund for your child, this will need to be closed. Insurance policies in your baby’s name will also need to be cancelled. Contact your local bank or provider, or visit the Gov.uk website here.
  • Have a chat with your health visitor about benefits you are still entitled to, such as free dental care and prescriptions.

Other things to consider

If you were breastfeeding your baby when they died, ask your health visitor or GP for advice on managing your milk supply.

If you joined any baby groups, such as supermarket baby clubs or online clubs, you will need to tell them that you don’t want to receive any more information. Otherwise, you may continue to be contacted with offers and information about your baby’s expected progress. The Mailing Preference Service can help with this, and you can register online.

If a twin dies

If your baby was a twin, you may feel that you are not able to grieve properly for the baby who died. You have the surviving baby who needs your love and continued caring with day-to-day routines, leaving you with little time for your own emotions. Your feelings will also be mixed because your surviving baby is a constant reminder that there should be two.

Your doctor or the hospital may suggest that your surviving baby goes into hospital for tests, although it is extremely rare for both twins to die.

You may also want to speak to your midwife, health visitor or paediatrician about joining your local Care of the Next Infant (CONI) scheme where you can receive extra support and reassurance.

Anniversaries such as birthdays may be especially poignant when a twin has died. It is important, as your surviving child grows, that they know that they had a twin brother or sister. Sharing your memories and photographs may help.

Returning to work

If you are employed, returning to work can be a difficult time. Many of your colleagues will be unsure of whether or not to say anything about your baby’s death and your feelings. Most people do care, but they may find it difficult to express their sympathy.

One parent told The Lullaby Trust: “It was awful going back to work. I was terrified of embarrassing myself by bursting into tears. Everyone else was terrified of me, not knowing what they should be saying or doing.”

Many parents, particularly mothers, are not at work when their baby dies. If parents had decided to leave work or take maternity/paternity leave, they may find it difficult, when they return, to explain the change in circumstances. It may be helpful to ask your employer to tell your colleagues what has happened before you return.