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.

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 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. This is now done using a tool to support standardisation and best practice. This is called 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); an external Health Safety Investigation Branch investigation (England), when it's thought something may have gone wrong with the quality of NHS care
  • Child Death Overview Panel (CDOP) report 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.

Post mortem

A post mortem (also called an autopsy) is the medical examination of a body after death. Post mortems on babies are done 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 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 Health 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.

Thinking about taking legal action or making a complaint

We are so sorry that you find yourself thinking about legal action following the death of your baby. The following information could help you decide whether and how to go ahead with this action, and the organisations and services who will be able to support you through this difficult time. In the first instance you should be told that the hospital will undertake a review into your baby’s deaths. The review should include your questions and concerns about your care that should then be addressed by the review team at the hospital. In some cases an independent body (such as the coroner or the Health Safety Investigation Branch in England) will conduct a separate investigation about what happened, but this is usually when a baby dies during labour at term (more than 37 weeks of pregnancy). You'll see more information about different review and investigation processes on our pages here.

If you want to make a complaint about any aspect of your care (including the review process itself) you can make  complaints via the PALS (Patient Advisory Liaison) service where your baby was born (or died, if this is not the same hospital). Every Trust or Health Board has details of the PALS service on their website.

If you do decide you would like to explore legal action, we recommend that you contact the charity AvMA  (Action Against Medical Accidents) https://www.avma.org.uk/?download_protected_attachment=How-AvMA-can-help-you.pdf.

AvMA can provide help and advice via their helpline, can help you find a solicitor and can advise on compensation claims. Free, impartial advice from a trained solicitor is available, who can sign post you on to further services. AvMA produces self-help guidance for parents seeking information and support. This can be found at www.avma.org.uk/guides. These guides give advice on finding a solicitor.

FAQs for families about review and investigation

A hospital-based review and the PMRT

What is a hospital-based review? A hospital-based review is part of standard NHS care. It is when a team of health care professionals at the hospital where your baby was born and/or died review the care mother and baby received to understand as much as possible about what happened and why your baby died.  They will use the Perinatal Mortality Review Tool (PMRT) to guide them in assessing your care against national and relevant local guidelines. This will help them reach a consensus on what happened in a review meeting, the results of which will be reported back to you.

What is the Perinatal Mortality Review Tool (PMRT*) and how does it work? The PMRT is a web-based process for conducting a hospital review into a baby’s death to understand what happened and why the baby might have died. It is not the same as a post mortem

How does the PMRT work? The on-line tool is designed to bring as much information about  you, your pregnancy, birth and any other information about your baby from medical notes into one place. Your care and your baby’s care are assessed against national (set out by National Institute for Clinical Guidance NICE), and any local hospital, guidelines relevant to every aspect of your care, from your pregnancy booking right through to postnatal care. Once all the information (and any more they may have such as a post mortem), is put into the on-line tool a team of health professionals will use it to discuss your care at a hospital-based review meeting.

Why do hospitals do reviews of babies who die? Hospitals review the deaths of babies to understand more about why a baby died. A review will evaluate whether appropriate care was given to a pregnant woman and her family, in line with relevant national and local guidelines. It may be a review will find that good care was given; there are cases where a review may find care did not follow guidelines, and action needs to be taken to improve care for future families. It’s important to understand that a review is not the same as a post mortem, which is a clinical investigation to understand the  cause of death. Information from a post mortem, if there is one, may add to the review in understanding why a baby died.

Will my baby’s death definitely be reviewed by the PMRT team? A hospital-based PMRT review is undertaken for all babies, weighing more than 500 grammes, whether they die during pregnancy or during their first four weeks of life. Babies who die later having received care in a neonatal care unit will also be reviewed using the PMRT. A baby who dies outside the hospital will also be notified to the coroner/procurator fiscal (Scotland), who will open an investigation and possibly an inquest to understand the cause of death.

My baby died some time ago – will a hospital review have been done?

Some hospitals started using the PMRT to review deaths in early 2018 but it wasn’t used more widely until 2019. Even if the PMRT was not used, some kind of review should have taken place to understand as much as possible about your baby’s death. NHS Resolution in England has been encouraging hospitals to use the PMRT for all baby deaths specifically since December 2018.

Is the PMRT the same as a Serious Incident Investigation (SII)? A Serious Incident Investigation occurs when the hospital is concerned that something may have gone wrong with NHS care. The PMRT tool itself can be used to review a serious incident in maternity or neonatal care, but not all baby deaths will trigger an SII. In England, most SIIs are now being undertaken by the Health Safety Investigation Branch (HSIB) which is independent of the NHS. If your baby died in an English hospital unit at term (37 weeks’ gestation or more) due to an event in labour, this may be the case.

If my baby was born in one hospital but died in another, who will do the review? The hospital where your baby died is likely to lead the review of your baby’s death. The hospitals where your baby was born and died should work together to share information, however. It is important as part of the review to understand your care in pregnancy as well as during labour and birth and any care your baby had after he or she was born.

What if my baby died at home, after he/she was born in hospital, will the hospital still review their care? If your baby died at home, the coroner/procurator fiscal (Scotland) will be notified. They  may open an investigation and will decide whether to hold an inquest or not. If your baby died within 4 weeks of being born or having received care in a neonatal unit at a later stage, then the hospital should also undertake a hospital review. They may not do this until the coroner has completed the report from their inquest. Ask your hospital what is likely to happen.

Is the information about me that’s put into the PMRT for the review confidential? The information about you and your baby will only be used for the PMRT review. Information from the PMRT is linked to a data system already run on behalf of all UK governments and which is kept in a secure way at the University of Oxford. This data system collects brief information about every pregnancy and birth which ends in the late fetal loss, stillbirth or the death of a baby. This is in order to monitor what is happening between different hospitals, regions of the UK and countries in the UK, and to understand what factors contribute to baby deaths. The collaboration commissioned to do this work, MBRRACE-UK, then makes recommendations to prevent future deaths, wherever possible. You can find out about what information is stored in the PMRT data system here. You can choose to opt out of the PMRT being used to review your and your baby’s care; since reviewing your care is part of standard NHS care, hospitals will find another way to review your care.

How will I know that a review is taking place? Staff at the hospital where your baby died should tell you about the review soon after your baby has died. They should give you some written information explaining what the review is and what you should expect. Sands has played a key role in developing resources to help professionals in supporting parents through a review. These resources were launched in July 2019.

Who is part of the review team? Health professionals representing all the areas of care you and your baby received will be on the review team. All review teams include midwives and an obstetrician but if your baby was on a neonatal care unit then a neonatologist should be present too.

Will the people involved in my care be on the review team? Sometimes they are but not always. This may depend on work shifts and what staff are working in the hospital the day the review is taking place.

What if I have questions or my own views/concerns about what happened and why my baby died? The hospital should let parents know the review is taking place and ask parents if they have any questions or issues they want the review team to address. This doesn’t mean you’ll be asked to attend the review meeting itself, but that a member of staff at the hospital will support you in recording your questions and concerns to ensure they are answered at the review meeting. If you haven’t been offered this opportunity but want to be involved, get in touch with your hospital as soon as possible to ask them. 

What if I don’t have any questions about what happened? Some parents do not have questions or concerns they want to share with the review team. Every parent and every situation is unique. The review report should still be shared with you regardless, if you wish, whether you have specific questions or not.

If you have questions/concerns about your care you want the hospital to address

I have questions about what happened – how do I get these addressed? You should have been informed about the review process after your baby died. If not, contact your hospital and ask them about their process for reviewing your baby’s death. Let them know you have questions and concerns you would like addressed by the review team and ask how this might be done.

Can I choose the way that I feedback my questions and views about my care? You should be given options about how you feed your questions and views to the hospital review team, either in a face-to-face meeting at a location within the hospital, on the phone, or in an email or letter. In some cases, the hospital may be able to offer you a face-to-face meeting at home. This is not always possible however.

I want our story to be part of the review but I can’t face doing this now – is there a time limit? Most reviews are done within 4 months so it is good to share your questions and your feelings about your care within this time frame. Check with your hospital what the time-frame is likely to be.

How do I know the team reviewing my care will take my views seriously?  While sometimes it can be hard to properly answer all parents’ questions about aspects of their care, the hospital should take your views seriously. It may be possible for the health professional (this may be a bereavement midwife, nurse or community midwife) who’s taken your questions and concerns about your care, to present them at the review team meeting. You could ask if this might happen. If this is not possible, your questions and concerns will be recorded and presented at the meeting by another health professional.   

I’m worried about saying anything negative – will it affect my care? The hospital review team will consider all aspects of care, good and bad, as well as issues to do with communication. What you say should not affect how the hospital treats you. Raising issues about poor care or communication may help staff at the hospital learn lessons to improve care for future families.

Is the PMRT process independent of the hospital or Trust/Health Board where my baby died? The PMRT process is not independent of the NHS Trust or Health Board, but it should be rigorous and objective, nevertheless. The way the PMRT is structured, assessing care against local and national (set out by National Institute for Clinical Guidance NICE) guidelines, aims to achieve that. The responsibility for good quality hospital-based review rests with the governance structure of the Trust or Health Board where your baby was born and/or died. Some review teams will include an external reviewer, but due to limited resources in the NHS, not all reviews do currently include an independent reviewer.

Timings and report findings

How long does it take a review team to finalise its report into my care? If you consented to a post mortem the review will not take place until the results of the post mortem are ready because the information from the post mortem will be important to consider, as part of the review. This may mean that the review takes place after 3 months or so and its findings are not reported back to you until at least 4 months or later. If there is no post mortem, there will be less information for the review to consider. While this may mean it takes less time for the review to conclude its findings, it may also mean that the review cannot answer all your questions about why your baby died.

Can I see the final review report? The final review report should be summarised in plain English for you, both in a letter and during a face-to-face meeting, if you wish. It is up to you how you would like the findings communicated back to you.  You can also ask to see the final, more technical, report of the review into your baby’s death if you wish. Ask your hospital for this if you would like it.

If something went wrong with my care or my baby’s care will the hospital tell me? NHS staff have a Duty of Candour to be open and honest with families when something goes wrong in NHS care. In cases where the hospital is already concerned that there may have been an issue with your care they will also open a Serious Incident Investigation. If your baby died at term (37 weeks’ gestation or more during  labour or soon after birth, an investigation will be undertaken by the Health Safety Investigation Branch (HSIB) which is independent of the NHS. This will only happen with your consent.

I am thinking about taking legal action but I don't know whether I should. Can anyone help me? In the first instance you may want to make a complaint via the PALS (Patient Advisory Liaison) service where your baby was born (or died, if this is not the same hospital). Every Trust or Health Board has details of the PALS service on their website. If you do decide you would like to explore legal action, we recommend that you contact the charity AvMA  https://www.avma.org.uk/?download_protected_attachment=How-AvMA-can-help-you.pdf (Action Against Medical Accidents). AvMA can provide help and advice via their helpline, can help you find a solicitor and can advise on compensation claims. Free, impartial advice from a trained solicitor is available, who can sign post you on to further services. AvMA produces self-help guidance for parents seeking information and support. This can be found at www.avma.org.uk/guides. These guides give advice on finding a solicitor.

*The PMRT stands for Perinatal Mortality Review Tool. It was developed by a team of collaborators from the Universities of Oxford, Leicester, Bristol, Manchester, as well as the Royal College of Obstetricians and Gynaecologists, The Royal College of Midwives, the British Association of Perinatal Medicine, the International Stillbirth Alliance, the Bristol PARENTS study group and Sands. Sands has played a key role in ensuring the voice of parents is at the heart of the work.