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First-hand accounts of premature baby loss inspire new resource

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A new online resource has been launched to support parents, relatives and health professionals in the wake of baby loss during mid pregnancy.

It is based on the first-hand experiences of parents whose baby died before, during or shortly after birth at 20 to 24 weeks of pregnancy, falling in between those who experience early pregnancy losses and those who experience stillbirth.

“The impact of losing a baby just before the legal stillbirth registration limit of 24 weeks is rarely recognised”

Lucy Smith

Visitors to the new website can watch videos of parents talking about topics such as finding out something was wrong, experiences of labour and giving birth. It also covers seeing and spending time with their baby, making memories and the long term emotional impact.

The work is part of Healthtalk.org, which is an online resource offering access to people’s experiences of over 100 health conditions and health related issues.

It was led by Dr Lucy Smith at Leicester University and Dr Lisa Hinton from Oxford University, who visited 38 parents around the UK in their own homes to talk about experiences of baby loss.

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, noted the researchers.

They found this fact had an impact on parents in both practical and emotional ways. For example, when a parent’s loss was referred to as a “miscarriage” they often felt unprepared for the experience of labour and birth.

Meanwhile, the lack of an official birth or death registration meant many parents felt their loss was not acknowledged and they suffered additional stress because they were not eligible for parental leave and maternity pay.

In February this year, the government announced a review to look at whether existing legislation should be changed to give new rights to parents who experience a late miscarriage.

“We really want to thank all of the parents who offered to share their personal experiences”

Lucy Smith

Health and social care secretary Jeremy Hunt said it would look at whether those who experienced a late miscarriage could be given new rights to certify and register their baby on official records.

Dr Smith 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,” she said.

She added: “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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