First-hand accounts of premature baby loss inspires new resource

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