Understanding why your baby died may be the most pressing question you have.
There are two key processes that might provide some answers. The first is a post mortem, a clinical investigation to understand what might have contributed to your baby's death. This is undertaken by a specialist pathologist, known as a perinatal pathologist. Only in rare cases is this undertaken without your consent and all parents should be offered the choice of whether they would like to consent or not to a post mortem on their baby.
Another complementary process for understanding as much as possible about what happened 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 the death of any baby 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 of a baby's death:
- Hospital review of your care, using the Perinatal Mortality Review Tool (PMRT) and it can be used for all babies after 22 weeks gestation and usually if the baby weighed more than 500 grammes at birth.
- NHS Serious Incident Investigation (SII), known in Scotland as a Significant Adverse Event Review (SAER) when it's believed something may have gone wrong with the quality of NHS care. In England, the Health Safety Investigation Branch may carry out these investigations
- Child Death Overview Panel (CDOP) reports in England for all newborn babies but not for stillbirths
- Coroner's (procurator fiscal in Scotland) inquest, when there's further concern about the circumstances of the death and it's needed to be established who, how, when and where the person died.
A hospital review of your care using the PMRT
The death of a baby before or shortly after birth should always be reviewed by the hospital to understand as much as possible what happened. This review is designed to support you and other members of your family in understanding why your baby died. It is also an opportunity for the hospital to learn any lessons if the care you or your baby received could have been improved.
Sometimes there’s a further investigation, particularly if something may have gone wrong with NHS care. In England this may be an NHS Serious Incident Investigation (SII) or a Health Safety Investigation Branch (HSIB) investigation; in Scotland this may be an NHS Significant Adverse Event Review (SAER).
What does the hospital review do?
In the weeks after your baby died, the hospital will hold a review meeting to find out as much as they 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 team will:
- Look at medical records, tests and results, including the results of a post mortem if you have consented to one
- Talk to staff involved
- Answer any questions or concerns you may have
- Look at guidance and policies
The review ream may decide the hospital needs to change the way staff do things or it may find that good and appropriate care was given to your family.
It's important that any questions or concerns you have about your care are addressed by the hospital review team. Before you leave hospital, staff should inform you about the review process and ask you if you would like to share your perspective or ask any questions about your care. To support you in doing this, the hospital should provide you with a key contact.
Your key contact will:
- Call you within 10 days of going home to inform you again about the review process
- Ask if you have any questions or would like to give your views to the review team
- Give you choices about how you might do this (you will not be asked to attend the hospital team review meeting in person but to give your questions through your key contact)
Keeping you informed
Unfortunately, it can take several weeks to gather all the information required for a review process. If you'd like to meet with a consultant before the review takes place, you can arrange this through your key 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 there's concern that there may have been a problem with NHS care that contributed to your baby’s death, an urgent investigation called an NHS Serious Incident Investigation (SII in England) or a Significant Adverse Event Review (SAER in Scotland) 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 or an SAER 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 an independent investigation by the Healthcare Safety Investigation Branch will replace some SIIs. See below.
When an independent investigation is needed - HSIB in England
If there's serious concern about your care, the Healthcare Safety Investigation Branch (England only) may open an investigation into the death of your baby. You should be told about this by staff before you leave hospital and the investigation won't take place without your permission.
The HSIB 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.
HSIB 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.
Information about HSIB specifically for families can be found here: www.hsib.org.uk/maternity/resources/trust-pack/
If your baby died as a newborn - CDOPs in 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 launched on April 1st 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
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 establish 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 an inquest into the death of a newborn baby 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 should keep parents 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 will have to 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. Because it involves more government agencies than a hospital review, and therefore more information gathering, an inquest can take 6 to 12 months or more to conclude. Currently in England, there is a national consultation about whether it is appropriate to include stillbirths within the jurisdiction of coroners.