Nicholas Embleton

Nicholas Embleton

Professor of Neonatal Medicine with >25 years experience in large NICU. Lead research programmes in neonatal nutrition & work with parents
www.neonatalresearch.net
www.neonatalbutterflyproject.org

Location Newcastle upon Tyne, UK

Activity

  • @LindiweMfede thanks for joining

  • I agree @EmilyJackson - it must be so hard regardless, but especially if couples have even slightly conflicting opinions, or where one partner 'suggests' it's the other ones decision. I've witnessed men saying "well it's your decision" to their partner. I think they are trying not to put pressure on the mother, but actually burdening the mother even more. A...

  • We're pleased you found it useful @DebbieParis . Thank you for sharing and encouraging others to join

  • thanks - I'm pleased you found it useful; thanks for your many insightful comments @EleniGaryfalaki

  • thanks; pleased you found it useful. Where I can, I feedback to all the families who have helped over the years. It would be great if you can share this course with colleagues - thanks.

  • I agree - the length of time you have to prepare or process the information does make a difference although it's clear that even when you know it is going to happen (e.g. complex congenital anomaly) the challenges and feelings of loss are just as great

  • I agree. It's clear that many (most?) women feel some level of guilt - for active decisions either to do, or not to do, or other things they might have done differently. Many women suffering baby loss following pregnancy interruption say they feel the 'decision' may impact on how empathetic or caring friends and families might be. I've witnessed a few staff...

  • thanks for joining; hope you find it useful and can share the course with colleagues and friends

  • Thanks @TaniaRochez - please direct message me via the butterfly project website if you would like to translate any more of our resources into Spanish

  • I understand what you mean @TaniaRochez , but I know many parents who felt exhausted by this approach. Some parents had the energy when they were asked "how many children do you have" and said things like "I have 3 children, but only 2 are alive". But others find that more difficult to maintain. I also know a mother of triplets, where one baby died and she...

  • that's interesting @RachelClare - many parents say they felt special and this was typically reinforced by friends and family, but I have heard some parents, like you, say that some people said things like 'are you sure', 'it can be complicated' as if it's something you deliberately chose to do

  • I agree @LucyFullerton Parents experiences are so varied depending on circumstances, TFMR compared to complications of prematurity, timing, MC v DC, reason for non-survival, problems in the surviving baby/ies etc. etc. We should think through how these different circumstances might impact, but never presume what an individual parent is thinking. Different...

  • that sounds lovely @TaniaRochez

  • @AndreaWare thanks so much for joining - I'm pleased you found it useful, please share with colleagues and others who might benefit. although the course was designed for professionals/supporters we think it may also help families and friends better understand the challenges parents face

  • thanks for joining @kousarmubeen

  • thanks for joining - please keep the conversations going and tell your peers and friends about it

  • Great that you feel the practical aspects can be helpful @AmyBaker

  • It's great to know that the course is helpful @LeanneLampen - thanks for joining. Tell your freinds and colleagues and keep the conversation going.

  • Most parents like and value opportunities to talk about their twins using their actual names - it's an important part of their identity but I fully agree that asking parents what they would like as part of starting the conversation is really important.

  • thanks for joining @AdeleBurton ; we're pleased you found it a rewarding course. Please tell friends and colleagues you think might benefit.

  • thanks @GailConn Gail for joining - if you find the course useful perhaps you can persuade some colleagues to also join

  • take it slowly; it can be emotional thinking about these topics and hearing the stories

  • they made a big difference: in the UK the v-create video system has worked really well in this sort of setting

  • thanks @MichaelaHalfhead - it is important to recognise that hospital staff may sometimes be the only other people apart from parents who met the baby before they died, or have seen the baby if they were stillborn. That definitely creates a special connection between bereaved parents and staff.

  • thanks for joining. I hope you find the course useful & look forward to your comments and conversations

  • thanks @TaniaRochez for doing the course. I hope it was useful and relevant in your setting. Please tell others you meet about our course if you think it helps. I don't have any contact information for you but it would be great (if you want) to email you so I better understand how we could share these resources in Mexico. Nicholas.embleton@ncl.ac.uk

  • Thanks @ElishaScott - we're delighted you found it useful. If you are a health professional please help us spread the word. Tell others what you learned; see if you can persuade them to complete the course as well. Best of luck going forward

  • thanks @LauraAtherton - so pleased you found it useful

  • those are lovely ideas

  • thanks @LauraAtherton - you're right. Important to point out that the parents we spoke to recounted their experiences from lots of different hospitals. Even now, having heard these clips hundreds of time, I squirm when I hear how health professionals behaved. But I'm also sure I wasn't as well informed or aware 10-20-30 years ago!

  • Completely agree @AndreaWare - but there are situations where gender, culture and/or religion intersect, and a few people feel uncomfortable with others in their personal space. Learning to 'read' body language & asking permission can help. As a white, older, professionally senior male, I think very hard about what feels right before I initiate physical...

  • thanks @MichelleHoward - it would be great if you could share this course with other members of the community & health visiting teams

  • thank @GiovanniChen - I'm pleased you found the course useful

  • thanks @RACHELTOWELL for all your comments & insights, really appreciate it - I'm pleased you found it useful. if you can persuade others to do the course that would be amazing!

  • I'm very sorry the doctors behaved like that @TaniaRochez

  • thanks Michaela. I often feel one of the key challenges is to try to engage & help educate others in our own teams who are less 'open' or willing to think about these sensitive topics. How to we engage with them?

  • thanks for joining. I'm sure many others will benefit from your insights

  • thanks for sharing those useful insights Laura

  • thank you Tania for joining the course and sharing your painful journey; I'm sure many others will benefit from your insights. We have translated our original guideline into Spanish - if you would like to collaborate with us and translate any of our other materials - like 'tips' for families & friends etc. please send me message via...

  • شكرا لانضمامك إلينا thank you for joining us

  • sorry it's been so complex and challenging

  • I've been at many professional meetings, conferences/symposia on this or similar topics where male presence is very unusual.

  • thanks for joining, hope it's useful - interested in your view around gender perspective & the 'mistakes' we may make when assuming traditional gender roles, feelings & approaches. We can miss a lot when our blinkered thinking means we only 'see' stereotypical gender responses to grief & loss.

  • thanks for joining - I know this will be difficult for you, but I'm sure many will benefit from your unique insights

  • Welcome everyone! There are lots of great conversations in the steps to follow. We really want to hear from you because we can all learn from everyone's insights; from a first year student through to experienced counsellors. You don't need to comment lots, but a couple of sentences really help others, and they also help us as educators understand whether we...

  • If you are a Muslim, work in a predominantly Islamic country, or you come from other religious backgrounds what do you think about using a heart symbol instead of a Butterfly?

  • We're interested in what people think - do you think parents feel differently if they had identical (compared to non-identical) twins, and one died; does the babies sex affect things; or if the baby loss occurs when the foetus is very small e.g. before 20 weeks gestation, compared to a fully grown term baby. What do you think?

  • I've often wondered how our health professional identity impacts on our personal identities. And what behaviours are considered acceptable. Many staff especially nurses on a NICU cry when a baby dies. But many feel they should 'hold back' their tears until they are in private, although I personally feel expression of sadness is fine. But how would parents and...

  • If your hospital want resource packs, cot cards, posters you can get these from https://www.theskyehighfoundation.com

  • I agree - as a professional or a friend it's hard not being able to 'make things better'. But I've learnt to realise how important it is just to 'be there'. Even without saying much. One of the things that struck me in our research was realising that "it's the little things that count" - offering to be there, just to be there or demonstrate empathy. As an...

  • Continuity from health professionals is so important. Sadly this can be really challenging on some SCBU/NICUs. That's why is so important to include these aspects of care at nursing and medical handover. I cared for many babies in the past who I never knew had lost their co-twin at some stage before or after birth.

  • We offer to all parents to write the name on the Butterfly cot card if they want. Important to use a waterproof marker pen (so you can wipe clean). We also think offering parents for them to write the co-twins name themselves is important.

  • I agree. Women (and partners) feel a lot of guilt, either because it happened, or because of their decisions. I think many overlook the grief and distress associated with "Termination for Medical Reasons". Tommy's have some useful advice https://www.tommys.org/baby-loss-support/tfmr-terminating-pregnancy-medical-reasons

  • If you work for an advocacy, parent or other organisation and would like to work with us please contact me directly

  • I agree; our initial written publications described what parents felt in their own words. But there is no substitute for hearing from parents directly which is why we created the www.neonatalbutterflyproject.org film project. many many more videos to listen to there.

  • emergency workers

  • everyone is different and cope in different ways

  • working out what is 'positive' stress that energises and drives; and when it becomes negative and counter-productive

  • Major important topic; as someone with a busy, high responsibility job I am lucky to not feel particularly stressed - this means I find it difficult to understand why others seem to be so stressed about things I wouldn't think were important.