First-hand accounts of premature baby loss inspires new resource

Posted by pt91 at Jun 14, 2018 12:45 PM |
New, free information resource to improve support for parents losing a baby before 24 weeks of pregnancy

Issued by University of Leicester on 14 June 2018

A new resource has been launched based on the first-hand experiences of parents whose baby died before, during or shortly after birth at 20 to 24 weeks of pregnancy: .

The resource aims to support parents, loved ones and health professionals. Visitors to the website can watch videos of parents talking about topics such as finding out something was wrong, experiences of labour and giving birth, seeing and spending time with their baby, making memories and the long term emotional impact.

This work was led by Dr Lucy Smith at the University of Leicester and Dr Lisa Hinton at the University of Oxford who travelled around the UK talking to 38 parents in their own homes about experiences of baby loss.

Pregnancy normally lasts for 40 weeks. The death of a baby who is born alive and dies shortly after birth is officially registered whatever stage of pregnancy they are born at. However there is no formal registration of babies born showing no signs of life before 24 weeks of pregnancy.

The researchers found this impacts on parents in both practical and emotional ways. When a parent’s loss was referred to as a “miscarriage” they often felt unprepared for the experience of labour and birth and the lack of an official birth or death registration meant that many parents felt their loss was not acknowledged and they suffered additional stress as they were not eligible for parental leave and maternity pay.

The work is part of which is a resource offering access to people’s experiences of over 100 health conditions and health related issues.

Dr Lucy Smith, an NIHR Career Development Fellow from the University of Leicester, said: “The experience of losing a baby is devastating but the impact of losing a baby just before the legal stillbirth registration limit of 24 weeks is rarely recognised.

“We hope this resource will provide support to these families who often feel overlooked and welcome the Department of Health and Social Care review of parents’ rights to register their baby.

“We really want to thank all of the parents who offered to share their personal experiences and the help of support organisations (Sands, the Miscarriage Association and Antenatal Research and Choices).”


Notes to editors:

Dr Lucy Smith tel: 0116 2525418 email:

This is a summary of independent research funded by National Institute for Health Research (NIHR) Career Development Fellowship award to Lucy Smith (Reference NIHR CDF-2013-06-018 Smith).

The new resource is available at: is the website of DIPEx, a registered charity number 1087019.

The National Institute for Health Research (NIHR): improving the health and wealth of the nation through research.

Established by the Department of Health and Social Care, the NIHR:

·     funds high-quality research to improve health

·     trains and supports health researchers

·     provides world-class research facilities

·     works with the life sciences industry and charities to benefit all

·     involves patients and the public at every step

For further information, visit the NIHR website

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