When a baby dies

‘Sudden unexpected death in infancy’ (SUDI) is the term used to describe the sudden and unexpected death of an infant (a child under the age of one year) that is initially unexplained. A term that is often used if a child over one year (and up to 18 years) dies unexpectedly is ‘sudden unexpected death in childhood’.

Some sudden and unexpected deaths can be explained by the post-mortem examination (a careful internal and external examination of the body performed by a trained specialist). The examination could show, for example, an infection or other illness such as a genetic disorder that could have caused the death. Deaths that are still unexplained after the post mortem are usually registered as ‘sudden infant death syndrome’ (SIDS) for babies under a year old. (Deaths of children up to 2 years old are sometimes also recorded as ‘sudden infant death syndrome’). SUDC is sometimes used for children over the age of 12 months who die without a known cause. The term ‘unascertained’ may sometimes be used, which is another way of saying that the cause of death cannot be found.

‘Cot death’ was a term often used in the past to describe the sudden and unexpected death of a baby. It is used less often now, because it suggests that sudden infant death can only happen when a baby or young child is asleep in their own cot or bed, which is not the case.

The coroner will get any initial findings. Where possible, with the coroner’s approval, you can be given some information about these results. The final post mortem examination report may take several months to be completed, depending on the number and type of tests conducted.

The post-mortem examination may help the coroner decide whether an inquest is needed. You may wish to ask a paediatrician (doctor who has special training in looking after children) to go through the report with you, as the report will be written with medical terminology that may be confusing to a person without specialist knowledge in the field. The post-mortem report is often sent directly to you, but you can ask your key worker to check this.

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

You may wish to discuss possible options with your chosen funeral director, and take time to consider what would be most meaningful for you and your family. If you have religious or other requirements that may affect the timing of your child’s funeral, please discuss these with hospital staff. They will alert the coroner who will try to accommodate your wishes, though it may not be possible.

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 examination is complete, you will be asked what you would like to happen to the samples.

There are three options:

1. For the tissues to be kept so they could be tested in the future or used for research.
2. To allow the hospital to dispose of them.
3. To have them returned to you.

Some parents have found great comfort in knowing their child’s tissues might help research, or that future medical advances may give more answers. It is very rare for whole organs to be kept for additional tests, but should this need to happen the reasons will be explained to you.

Even if at first no cause of death is found, it is possible that in the future as medical research advances, a tissue sample taken from your child could be looked at again, with your consent, and an answer may eventually be found.

You may have been able to hold your child 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 can choose how and where you wish to care for your child before the funeral.

Many families choose to visit their child at the hospital or funeral parlour. Others choose to have their child at home for a few hours or days before the funeral, which for some families is a chance to say ‘goodbye’ in familiar and loving surroundings. Some families choose to invite a representative from their faith, to say a prayer or give a blessing.

Ask the healthcare professional or funeral director about any ways in which your child’s appearance may have changed, or about any visible signs of the post mortem examination (usually only visible if you choose to undress your child), if they don’t offer this information.

Your child 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.

Financial arrangements

Unfortunately there are other financial practicalities to sort out during this difficult time. It may be easier to focus on these after the funeral when you have a bit more time, or you could ask a friend or family member to help you.

You will need to tell your Child Benefit Office about your child’s death. Child Benefit payments will usually carry on for 8 weeks after a child’s death and you may still be able to claim Child Benefit if your child died before you made a claim. You’re entitled to up to 8 weeks of Child Benefit if you claim within 3 months of the death. You can do this either online through the direct.gov.uk website or by contacting the Child Benefit Office.

If you have been employed, and your child died under 1 year of age 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 though your child has died. Talk to your employer about what they can offer you or check your contract.

If you opened a savings account or an insurance policy in your child’s name, it will need to be cancelled by contacting the bank, building society or other provider concerned.

There are other benefits that you are still entitled to if your child died under 1 year of age, such as free dental care and prescriptions.

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

Some parents have found it helpful to ask their employer or senior colleague (who may be less personally close) to speak to colleagues about what has happened, before a return to work.

Some parents are not in work when their baby or young child 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.

As a bereaved parent, you will be entitled to paid leave following the death of your child. This will be two weeks and there will be some flexibility over when you take this. It will be paid at a set amount, which much like a statutory sick pay, may be less than your salary.

Talk to your employer as soon as you are able to. Many will be sympathetic and may offer more flexibility around when you return to work.

You can self-certify sickness absence for the first week, and then you will need to visit your GP for a ‘fit note’ to continue to take sick leave. Try to contact your work, or ask someone else to, if you need more information about your employer’s position.