Understanding why your baby died may be the most pressing question you have. Not all baby deaths are understood and more research is needed to understand why some babies die.
There are, however, two key processes that might provide some answers. The first is a post mortem, a clinical investigation to understand any factors that might have contributed to your baby's death. This is undertaken by a specialist pathologist and all parents should be offered the chance to have a post mortem on their baby.
The other is a hospital review of the care mother and baby received during pregnancy, labour and after birth if your baby died after birth. This is a part of standard NHS care and all baby deaths should be reviewed to understand events leading to, and around the death.
There are several different types of review or investigation depending on the circumstances:
- Hospital review (the PMRT) of your care, for all babies after 22 weeks gestation
- NHS Serious Incident Investigation and an external Health Safety Investigation Branch investigation, when it's thought something may have gone wrong with the quality of NHS care
- Child Death Overview Panels for all newborns but not stillbirths
- Coroner's (procurator fiscal in Scotland) inquest, when there's further concern about the circumstances of the death
A post mortem (also called an autopsy) is the medical examination of a body after death. Post mortems on babies are performed by perinatal or paediatric pathologists, doctors who specialise in identifying conditions that affect babies, and who examine babies to find out why they died.
A senior doctor, midwife, nurse or other health professional will ask if you want to consider a post mortem. Unless it has been ordered by a coroner or a procurator fiscal (which is sometimes done in cases of neonatal death), a post mortem cannot be done without your consent or authorisation.
If you decide to have a post mortem, you can be confident that the staff will take great care of your baby at all times.
A hospital review of your care (PMRT)
The death of a baby before or shortly after birth should always be reviewed by the hospital to understand what happened. This review is designed to support you and other members of your family in understanding why your baby died. It will also try to prevent other children dying from the same cause.
Sometimes there’s a further investigation, particularly if something may have gone wrong with NHS care.
In England, if your baby died at term (37 weeks or more) due to an unexpected event, it may be investigated by the Health Safety Investigation Branch (HSIB).
In the coming weeks, the hospital will hold a review meeting to find out as much as we can about what happened and why your baby died. This will be held by the hospital team and is called a hospital review meeting.
The review meeting will:
- Answer any questions you may have
- Look at medical records, tests and results, including a post mortem if you have consented to one
- Talk to staff involved
- Look at guidance and policies
- Be open and honest with you and tell you what they know about what happened.
- The review may also tell the hospital that it needs to change the way staff do things or that good and appropriate care was given to your family
Your views are important and before you leave hospital, staff should inform you about the review process and ask you if you would like to share your experience or ask any questions about your care. To support you in doing this, the hospital should provide you with a review contact.
Your key review contact will:
- Call you within a week of going home to inform you again about the review process
- Ask if you would like to ask any questions or give your views to the review team
- Give you choices about how you might do this
Keeping you informed
Unfortunately, it can take up to 12 weeks to gather all the information required for a review process. We understand that this is a long time to wait and if you would like to meet with a consultant before the review takes place, you can arrange this through your review contact. The hospital may, however, not have any further information about why your baby died by then.
Once the review report is completed, a consultant will discuss its findings with you. The hospital can also send you the review report by post or email if you prefer.
Sands is a member of the collaboration developing and supporting the roll out of the PMRT, ensuring that parents' voices are at the heart of any review of their baby's death.
For more information about the PMRT hospital review process go to: https://www.npeu.ox.ac.uk/pmrt/information-for-bereaved-parents
If something went wrong in the NHS
If something may have gone that caused your baby’s death, an urgent investigation called an NHS Serious Incident Investigation, or SII, is begun. This is so that the NHS can be open and honest with families about any mistakes and learn from any poor care to prevent future harm or deaths. Organisations should take the views of families into account when deciding whether or not an SII is needed.
A serious incident is a death or harm to a patient which is unexpected or avoidable. Deaths in maternity and neonatal care that trigger an SII will usually include a death where the mother arrived in labour close to her due date but the baby subsequently and unexpectedly died either during labour, birth or shortly after. In England a Health Safety Investigation Branch investigation may replace the SII. See below.
When an independent investigation is needed - England
The Healthcare Safety Investigation Branch in England was established in April 2017 and their investigations into baby deaths started in May 2018 although haven't as yet covered all deaths they have been asked to investigate. HSIB is funded by the Department of Health but works independently. It will carry out an investigation if your baby died during or after delivery after 37 weeks of pregnancy because something went wrong in labour. The critical difference between this and a hospital review is that HSIB investigations are wholly independent and not run by staff from the Trust where the baby was born or died. An HSIB investigator will contact you within 5 days of going home from hospital to let you know about their investigation, which will only take place if you agree to it. A hospital review of your care will still be carried out even if an HSIB investigation is also being done, but the hospital-based review will not conclude its findings until HSIB has finalised its report.
The HSIB . You will see information specifically for families here: www.hsib.org.uk/maternity/resources/trust-pack/
If your baby died as a newborn - England
By law in England, the death of every child from a newborn up to 18 years old must be reviewed by a local Child Death Overview Panel (CDOP). This is in order to prevent future deaths where possible. Almost 100 CDOPs are in place across the country, and each is accountable to the local safeguarding children board. They are made up of representatives from social care, and the police as well as coroners and paediatricians. Panels meet several times a year to review all the child deaths in their area. Panels are not given the names of the children who died or the professionals involved in their care. The main purpose is to prevent similar deaths in the future.
Child Death Overview Panels do not produce reports on individual child deaths, which is why parents do not receive any information from the panels about their individual child. The panels do, however, produce an annual report which is a public document.
You should have been told by your hospital, if your baby's death was being reviewed by your local CDOP. If not and to find out the contact details of the CDOP in your local area go to: https://www.gov.uk/government/publications/child-death-overview-panels-contacts
Sands is closely involved with the National Child Mortality Database, a new project launching in 2019, which will collect all information on child deaths across England from CDOPs to get a national picture of how deaths might be prevented and care improved for future families.
The role of the coroner or procurator fiscal (Scotland)
When a baby dies after birth the hospital must, by law, inform the coroner (or procurator fiscal in Scotland). It's his or her job to ascertain where and when the baby died and to establish the cause of death in a broad sense, and if it's thought to be 'unnatural'. If the coroner is concerned about the circumstances of the baby's death being suspicious, he or she will open an investigation and then possibly an inquest. The coroner may then write a report about a specific concern if they feel this might prevent future deaths.
It's not common for a coroner to open at inquest into the death of a newborn in hospital, but if they do they may require a post mortem. In this instance, parents are not asked for their consent, but the coroners office will keep them informed about any decisions that are made. As parents, you will be given the details of when the and where the inquest will take place. You may be called in as a witness in which case you must attend the inquest. You can, though, ask any questions you have at the inquest. There may be other professionals who are asked to be witnesses.
In Northern Ireland all stillbirths as well as neonatal deaths must be reported to the coroner. An inequest can take 6 to 12 months or more to conclude.