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Wave of Light; Baby Loss Remembrance and Research

Guest post by Dr. Elizabeth Bailey, Centre for Technology Enabled Health Research

One in five families in the UK are affected by baby loss, which can take many forms such as miscarriage, ectopic pregnancy, stillbirth, neonatal loss and sudden and unexpected deaths in infancy. Last month, the 9th – 15th of October represented ‘Baby Loss Awareness week’ 2016, a week supported by a group of charities who are committed to supporting families who experience baby loss occurring during pregnancy or the death of a baby after birth.

Baby loss awareness week culminates in ‘The wave of light’ where those who have experienced loss can light a candle in commemoration, and raise awareness. Increasingly images of lit candles can be seen populating social media threads such as Facebook and Twitter as part of the ‘digital wave of light’, crucially working to break the taboos around baby loss and allow parents to discuss their loss openly.

In an historic event this year, on 13th October 2016 there was a parliamentary debate in the House of Commons around baby loss – the first time that this issue was discussed in the chamber. This debate stemmed from the work over the year of an All Party Parliamentary Group on Baby loss. This group recognised the importance of the views and experiences of parents in feeding into the debate and so on Monday 10th of October, anyone wishing to do so was invited to participate in a Twitter debate to inform the formal debate in the flowing days. This led to a highly emotional and significant discourse; highlighting the needs of parents who have experienced baby loss and with many MP’s recounting their own personal stories, breaking the silence on this kind of bereavement in the primary debating chamber of the UK government.

This week’s campaign resonates with a number of projects we have undertaken within the Children and Families Research theme (CFR). We continue to research families’ needs around paediatric palliative care and build on our track record in this area. Within our theme of ‘Healthy Beginnings’, we are developing a focus on research into care following stillbirth; in particular memory making and photography, and in communicating healthy messages to pregnant women, including self-monitoring of fetal movements, in a manner that addressed health inequalities, and which aim to support reducing stillbirth.

In addition, we are exploring an online support tool for supporting women attending a recurrent miscarriage clinic. This work is being undertaken with internal collaboration within Coventry University and with our NHS partners at UHCW NHS Trust, who are working to implement NHS England’s ‘Saving Babies Lives’ A Care Bundle for reducing stillbirth, as well as conducting clinical research in these areas. As well as linking with our clinical colleagues, the research methods utilised within CFR typically involve parental and or service user views and experiences in informing care.

This is why we followed the events of this week with interest and celebrate the work being done by our politicians and charities to not only raise awareness and break the social taboos around baby loss in the UK but to also include and invite bereaved parents to have their say.

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For more information please see:

#babylossdebate #babylossawarenessweek

babyloss-awareness.org

House of Commons Parliamentary debate

NHS England’s ‘Saving Babies Lives’ Care Bundle

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