How parents' voices should be at the heart of understanding why babies die

Voices of Baby Loss

This episode shares stories from bereaved parents and handles the subject of baby loss, investigation and learning . 

This week we focus on how understanding why their baby has died is so important to parents. This can happen through a hospital review of their care to understand events leading up to their baby’s death. We focus particularly on how important parents’ perspectives of their care is essential to the review process.

1 in 150 births ends in the death of a baby either before, during or shortly after birth in the UK. That’s 13 babies a day. These deaths always trigger a hospital review but also sometimes an independent investigation. This is so parents and healthcare professionals can understand events leading up to the baby’s death. For parents, this is the narrative of their baby’s short life and for them and healthcare professionals there is also the issue of whether the death was potentially avoidable. If a baby’s death might have been prevented with better care, then there are vital lessons to learn about how to make care safer for other families and save babies’ lives in future.

We speak to Charlotte Bevan, joint Head of the Saving Babies’ Lives team at Sands, which focuses on supporting research, highlighting issues around avoidable baby deaths and making maternity care safer. She talks about what a review process following the death of a baby is, and how the lessons from reviews and investigations can improve care for families in the future. Charlotte talks about the research Sands is involved in ensuring reviews are fit for purpose, including how parents are involved in the review process into their own baby’s death.

She shares how vital it is to ensure all parents are given the opportunity to contribute to the review process into their baby’s death, as well as be part of research, regardless of their race, culture and socio-economic background.

We hear from Nick, who shares his story of losing Barney, his first child, just as Covid-19 was emerging as a global pandemic. He talks about how he felt being a father at this challenging time in the maternity ward, how his wife Gemma’s care was handled, and how the independent review into Barney’s death identified missed opportunities during Gemma’s labour to save his life.

Nick shares how he wanted Barney’s legacy to help make sure other parents and families did not find themselves in the same tragic situation that they found themselves in. He gives his advice to other parents going through reviews or investigations, and what it has been like for him and Gemma to get the final report back on what happened when Barney died. He also talks about the DISCERN study he has been a part of – a study aimed at understanding parents’ and healthcare professionals’ experiences of review and investigation processes when things go wrong in the NHS.

Useful links 

To hear more from parents’ own experiences of the review process, read our ‘In their own words’ report: In their own words - Parents' experiences of review | Sands - Saving babies' lives. Supporting bereaved families.

To watch our animation about how to involve parents in the review of their baby’s death visit: A Unique Perspective - Engaging Parents in Review - YouTube

To learn more about reviews and investigations when a baby dies, visit: https://www.sands.org.uk/support-you/understanding-why-your-baby-died/reviews-and-investigations

To learn more about the Perinatal Mortality Review Tool (PMRT), the standard UK process for reviewing a baby’s death, visit: https://www.sands.org.uk/pmrt

To learn more about the DISCERN study, visit: https://www.sands.org.uk/our-work/research/studies-we-fund/discern-study

For information, advice and guidance to help you stay safer during pregnancy, visit: https://saferpregnancy.org.uk/

To understand more about the research Sands is involved in, visit sands.org.uk/research

You can also follow @SandsInsights on Twitter to learn more about our research, policy and campaigns and professional support work.

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Sands is here to support anyone affected by pregnancy loss or the death of a baby, whenever and however they need it. You can get support from thesupport pages of our website , by joining our online community or by joining our facebook support group or facebook support group for Dads

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Sands saves babies’ lives and supports bereaved families. To learn more about Sands, visit our website or find us on facebook , Instagram and Twitter

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Voices of Baby Loss is produced by Under The Mast , creative audio productions