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  • Join our webinar on "the Butterfly project - loss of a baby from a multiple pregnancy"

    Stefan Johansson

    We look forward to welcoming you to the 4th 99nicu webinar on the 24th August at 17:00-18:00 CET, this time about the Butterfly Project, a framework that helps parents and staff to signify that a surviving infant has had a deceased twin or triplet sibling.


    Most women who have a multiple pregnancy (twins, triplets or more) do not have complications, but sadly, death of one baby from a multiple pregnancy is more common than many people appreciate. 

    A group of clinicians and researchers in Newcastle, UK, wanted to start to understand what it felt like to be a parent who has had to face such a difficult challenge and conducted a series of research studies. They spoke to parents who had lost one or more babies, and had a least one surviving baby from a multiple pregnancy, and they also spoke to midwives, doctors and nurses to hear about their experiences. During workshops, one of the parents suggested that a Butterfly cot card could signify the twin status for the surviving baby. Through the Butterfly project, these Butterfly cot cards have been made freely available to several hundreds of hospitals worldwide including the UK, North, South and Central America. The guidelines describe how to work with the Butterfly project in the NICU and has been translated into many languages.


    Speakers / panelists

    Nick.jpgNicholas Embleton, Consultant Neonatal Paediatrician, and Professor of Neonatal Medicine, Newcastle upon Tyne UK, having completed paediatric and neonatal training in Newcastle upon Tyne, UK and Vancouver, Canada. Professor Embleton helps lead a broad portfolio of research based in Newcastle, UK see www.neonatalresearch.net The research group includes the unique Great North Neonatal Biobank and studies include large-scale NIHR nutrition trials, and studies of immune, microbiomic and metabolomic development. Professor Embleton also leads a series of qualitative studies exploring the experiences of parents (and the staff who cared for them) who suffered baby loss, recently completing a project with staff and parents where one of a twin pair dies. This led to the creation of a educational film based website www.neonatalbutterflyproject.org  Professor Embleton coordinates the UK based Neonatal Nutrition Network (N3) www.neonatalnutritionnetwork.org , and has >200 peer reviewed publications in addition to numerous educational articles and book chapters.

    Alex.jpgAlex Mancini-Smith is a senior neonatal nurse with over 30 years’ experience and is the National Lead Nurse, leading the National Neonatal Palliative Care Project in the UK, the first innovative post of its kind. This is a unique role developing the training and education of staff nationally across neonatal, maternity and children’s palliative care teams. She has been instrumental in developing national and international guidelines and frameworks, including robust complex and palliative care pathways.  Building on her educational work over previous years, Alex Mancini-Smith supports and works alongside teams in embedding palliative care within routine neonatal care by training professionals across the UK and Europe in a variety of settings. Alex Mancini-Smith has published widely and is the Lead Editor for the ‘Nurses Textbook in Neonatal Palliative Care’, the first textbook of its kind, published January 2020. Current work includes the national review of the British Association of Perinatal Medicine’s palliative care framework for practice, previously published in 2010.

    Date and time
    24 August, at 17:00-18:00 CET

    Click here to register!



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    Thanks @tarek for sharing. We do the same. I personally think that the attention brought up around the diseased twin has a great value for us how we approach the family and also for the family to muddle through their tough experience. And the butterfly, there could not be a better symbol IMHO.

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