It is incredibly hard to experience a neonatal or infant death. In this article we explain what neonatal and infant death are, what might happen afterwards and where you can find specialist support.
What happens after a bereavement
Your carers will do their best to ensure you get good supportive care. In England and Scotland the National Bereavement Care Pathway (NBCP, 2022) is used, and this is expected to roll out to Wales and Northern Ireland.
Both the birth and death must be registered within 5 days (8 in Scotland). Tommy's has more information about registration.
Parents may be offered a postmortem investigation to look for a cause of death, and any implications for a future pregnancy (NHS England, 2022).
You may wish to give feedback about your care to your NHS Trust or Health Board (Scotland).
If you’ve been on an NCT course and you tell us about your loss, we will ask if you wish to stop contact or stay in touch with your group.
Tommy’s has information on how to stop communications from social media and other pregnancy advertising.
Where to get support after a bereavement
Several organisations have grown up to support parents after the death of a baby. Here are contact details for a few of them:
Bliss is the charity for parents of babies born premature or sick and has information on coping with loss.
Petals is a baby loss counselling charity.
The Lullaby Trust supports anyone affected by the sudden and unexpected death of a baby or child.
SANDS (Stillbirth and Neonatal Death Support) offers a range of support after the death of a baby.
Tommy’s supports parents who have lost babies to miscarriage, stillbirth, or premature birth.
What neonatal death terms mean
Neonatal mortality is when a baby is born breathing over 24 weeks gestational age and dies under 28 days of age. It doesn’t include termination of pregnancy which sometimes happens after 24 weeks for medical reasons. ‘Early neonatal’ is when the baby dies in the first 7 days, and this accounts for over half of all neonatal deaths (Nuffield Trust, 2023).
Perinatal morality includes stillbirths plus early neonatal deaths (under 7 days). Sometimes the term ‘Extended perinatal death’ is used, which includes both stillbirth (where the baby never takes a breath) and neonatal death up to 28 days.
Infant mortality extends recording up to the end of the first year.
What is known about neonatal death
In the UK there is a regular review of infant and neonatal death called the MBRRACE-UK Perinatal mortality report (Draper et al, 2023). Below we summarise what that and other research tell us.
Neonatal death may come after a period of care in a neonatal intensive care unit (NICU). It may happen despite maximum care, or following a decision to withdraw care. That context, and the support offered at the time, have a significant effect on the parents' emotional experience (Cambonie et al, 2023).
Some neonatal death is unexpected, such as sudden infant death syndrome (SIDS), also known as sudden unexpected death in infancy (SUDI) (Lullaby Trust, no date).
The UK Government has a national ambition to reduce stillbirth and neonatal death (Nuffield Trust, 2023). All mortality rates were falling until the early 2020’s, when they stalled and, in some cases, worsened. While a small proportion of deaths were related to the Covid pandemic, others were not. The rates increased across all socio-economic and ethnic backgrounds, which reinforced existing disparities in areas of social deprivation and Black and Asian families (Draper et al, 2023). The combined effect of deprivation and ethnicity leads to disproportionate effects for some families (Draper et al, 2023).
In 2021 the UK rate of neonatal mortality was 1.65 per thousand live births (Draper et al, 2023). In the same period the UK rate of infant mortality was 4.0 per thousand live births (Nuffield Trust, 2023).
Causes of neonatal death:
77 out of 100 deaths were a result of:
- Congenital anomaly (33 in 100)
- Extreme prematurity (before 28 weeks) (14 in 100)
- Neurological (14 in 100)
- Cardio-respiratory (9 in 100)
- Infection (8 in 100)
2 in 100 neonatal deaths were a result of something that happened during labour.
5 in 100 babies who died were born at 42 weeks or later.
(Draper et al, 2023)
Your rights after a bereavement
As well as coping with grief, losing a baby also impacts life outside your family. These links will help you navigate work and other rights.
This Government page includes details of what happens to statutory benefits if a child or baby dies
Working Families is a charity supporting rights at work, including after loss.
This page was reviewed in April 2024.
Cambonie, G., Desage, C., Thaller, P. et al. (2023) Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement. BMC Palliat Care 22, 58. https://doi.org/10.1186/s12904-023-01183-8
Draper ES, Gallimore ID, Smith LK, Matthews RJ, Fenton AC, Kurinczuk JJ, Smith PW, Manktelow BN, on behalf of the MBRRACE-UK Collaboration. (2023) MBRRACE-UK Perinatal Mortality Surveillance, UK Perinatal Deaths for Births from January to December 2021: State of the Nation Report. Leicester: The Infant Mortality and Morbidity Studies, Department of Population Health Sciences, University of Leicester. Available at https://www.npeu.ox.ac.uk/mbrrace-uk/reports [Accessed 9 Feb 24]
Lullaby Trust (no date) Why we exist. https://www.lullabytrust.org.uk/about-us/why-we-exist/ [Accessed 9 Feb 24]
NBCP (2022) Neonatal Death Bereavement Care Pathway. https://nbcpathway.org.uk/pathways/neonatal-death-bereavement-care-pathway [Accessed 9 Feb 24]
NHS England (2022) Postmortem https://www.england.nhs.uk/long-read/perinatal-post-mortem-investigation-of-fetal-and-neonatal-deaths-england-scotland-and-wales/ [Accessed 9 Feb 24]
Nuffield Trust (2023) Stillbirths and neonatal and infant mortality. https://www.nuffieldtrust.org.uk/resource/infant-and-neonatal-mortality [Accessed 9 Feb 24]
