Babies born at the limits of viability

Only 1 in 500 babies are born before 24 weeks' gestation; however, they comprise around a fifth of all baby deaths. This work aims to improve care for babies born at this extremely early stage of pregnancy.

This programme of work was funded by the National Institute of Healthcare Research through a personal career development fellowship awarded to Professor Lucy Smith. Lucy is continuing to undertake work to improve the care for babies, parents and families following extremely preterm birth.

This work is part of the TIMMS research group at the University of Leicester. TIMMS is known worldwide for carrying out research to improve pregnancy outcomes and the survival and long-term outcomes for babies born early (preterm).

Why is this work important?

There is wide variation between clinical teams as to whether a baby born at 22 or 23 weeks is showing signs of life and consequently whether they are reported as live born. In one hospital a woman may have their baby’s death registered as a neonatal death but in another hospital the same woman’s baby may have gone unregistered as a miscarriage. This has major unrecognised consequences on the NHS and parents. Firstly it impacts on data quality as healthcare services are not compared on a "like for like" basis. Secondly it leads to inequalities in parents' access to maternity and paternity leave, financial support and provision of official documents for their baby.

Resources from the study

Parents experiences’ of baby loss before 24 weeks of pregnancy

• Visit the health talk website to find out about the experiences of parents whose baby died before, during or shortly after birth at 20 to 24 weeks of pregnancy by seeing and hearing parents share their personal stories on film.
• Read our paper on parents' experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death
• See also our leaflet on second trimester loss we developed with the Miscarriage Association

Determining signs of life in extremely preterm babies

• View the MBRRACE-UK clinical guidance and training videos on determining signs of life in babies born before 24 weeks of pregnancy

The impact of variation in the determination of signs of life on reported mortality rates

• Listen to our discussion on Radio 4’s More or Less about this issue
• Read our paper on the effect of changes in national guidance in the UK around provision of survival focused care from 22 weeks gestation
• Here is our paper in the Lancet on Quantifying the burden of stillbirths before 28 weeks of completed gestational age in 19 European countries
• We have published information on the impact of classification of deaths before 24 weeks on international comparisons of mortality rates
• Here is an editorial on clarity and consistency in stillbirth reporting in Europe and why it is so hard to get this right?
• Read here the findings of a European workshop on producing valid statistics when legislation, culture and medical practices differ for births at or before the threshold of survival
• Here is another editorial on recognising the influence of parental factors on decision-making at the limits of viability
• A paper on variability in the management and outcomes of extremely preterm births across five European countries

People

• Professor Lucy Smith