First-hand accounts of premature baby loss inspires new resource

June 14, 2018, University of Leicester

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 , loved ones and . Visitors to the website can watch videos of parents talking about topics such as finding out something was wrong, 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 they are born at. However there is no formal registration of 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 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 Healthtalk.org which is a resource offering access to people's experiences of over 100 health conditions and 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)."

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