Sands Bereavement Articles

It can be difficult to go through a review and discuss details of why your baby died. You may find that some days you are keen to know what happened, but feel anxious as you approach the time when the results are going to be shared with you. You may worry about hearing details or medical facts that are hard to understand or feel angry with the people who cared for you. It is important that you look after yourself during this time.

Our Helpline and other support channels are here to support you before, during and after this process has taken place. https://sands.org.uk/support-you/how-we-offer-support

If something has gone wrong with care that may have caused your baby’s death, an urgent investigation called an NHS Serious Incident Investigation (SII) is begun. This is so that the NHS can be open and honest with families about any mistakes and learn from poor care. This learning could prevent future harm or deaths. The NHS should take the views of families into account when deciding whether or not an SII is needed.

For more information go to:

www.hsib.org.uk/maternity/information-families/

It can take many weeks to gather all the information required for a hospital review process. This may feel like a long time to wait and if you would like to meet with a senior doctor before the review takes place, you can arrange this through your review contact.

Once the review is completed, a report is written and you will be invited to discuss the results. The hospital can also send you the review report by post or email if you prefer. For more information about the PMRT hospital review process go to:

www.npeu.ox.ac.uk/pmrt/information-for-bereaved-parents.

The death of a baby before or shortly after birth should always be reviewed by the hospital to understand what happened. A review should offer to support you and other members of your family to understand why your baby died. It could also help to prevent other babies from dying from the same cause. In the weeks after your baby died, the hospital will hold a review meeting.

The review meeting will:

• Try to understand what happened and why your baby died.
• Answer any questions you may have.
• Look at medical records and test results, including a post- mortem if you have one.
• Talk to staff involved.
• Look at the guidance staff follow in similar cases.

The review may also provide the hospital with information that can help change the way staff work when they look after pregnant women and their babies.

Your thoughts, feelings and questions are important. Before you leave hospital, staff should inform you about next steps and offer the chance to ask any questions about your care then or in future. To support you in doing this, the hospital should provide you with a contact person called a ‘key review contact’. Your key review contact will:

• Call you within 10 days of you going home to inform you again about the review process.
• Ask if you would like to ask any questions or share your concerns with the review team.
• Give you choices about how you might contribute to the review, either in person, online or via telephone or email.

Another process for trying to understand why your baby died is a review of the care that mother and baby received. This includes care during pregnancy, during labour or after birth. This is a part of standard NHS care and all baby deaths should be reviewed.  There are different types of review

• There should be a hospital review of care for all babies who die after 22 weeks of pregnancy, regardless of what may be the cause of death. In England, Wales and Scotland this should follow a review process called the Perinatal Mortality Review Tool (PMRT)
• If it is thought something may have gone wrong with the quality of NHS care, the hospital should carry out a Serious Incident Investigation (SII)
• In England, an external body called the Healthcare Safety Investigation Branch (HSIB) will carry out an investigation for babies born at 37 weeks or later.

When a newborn dies the hospital must, by law, inform the coroner. In Northern Ireland stillbirths and neonatal deaths must be reported to the coroner.

It is not common for a coroner to open an inquest into the death of a newborn in hospital but if they do, they may ask for a post-mortem.

If the coroner is concerned about the circumstances of the baby’s death being suspicious, they will open an investigation and then possibly an inquest, which is a fact-finding inquiry around a death. The results may not be ready for up to 12 weeks, and sometimes may take even longer than this.

If there is an inquest, a baby’s parents will be given the details of when and where it will take place. You may be called in as a witness, in which case you must attend. There may be healthcare professionals called in as witnesses too. You can ask any questions you have at the inquest.

Once all investigations are over, the coroner will inform the Registrar of Births and Deaths. You will then be able to have the certificates that you need to organise your baby’s funeral.

If your baby died after birth and the cause of death is not clear, the doctor looking after your baby must, by law, refer the case to a coroner (in England, Wales and Northern Ireland) or to a procurator fiscal (in Scotland). The coroner can order a post-mortem without parental consent, though this does not happen in all cases. In Northern Ireland, the coroner may also order a post-mortem when a baby has died before birth and the cause of death is uncertain.

With your consent, as part of a post-mortem examination, a piece of tissue about the size of a postage stamp or a blood sample can be taken which can then be stored and/or sent to test for conditions in your baby’s DNA, also known as genetic testing. Any samples stored can be sent for testing in the future and can help provide information for future pregnancies.

In England, Wales and Northern Ireland human tissue samples can be stored with your consent only. In Scotland, samples automatically form part of the medical record.

Genetic testing may be especially useful if your baby had a condition relating to how cells in his or her body were formed or if the doctors think that you or your partner carry a genetic disorder.

If you think you may have another baby in the future, genetic testing may be particularly useful for assessing the risk of the same thing happening again. Depending on when your baby died, genetic testing may also be able to confirm their gender.