2018 International Conference on Stillbirth, SIDS, and Baby Survival

I’ve just returned from this conference and wanted to summarise and share some of the information that’s relevant to the baby loss community, and those that that support them.  I tweeted during the conference on the talks I attended and a very short summary of my perception of their talks can be found on my feed @thegriefgeek.  These speakers can be contacted or followed directly, so whilst the overall themes are included, I have not included their talks in detail in my summary below.

Firstly, this conference was dedicated to the prevention of baby loss in the first instance; sharing information on what is known about reducing the risks of stillbirth and SIDS (cot death). Professor Alexander Heazell explained that there are things that expectant mothers can do on a daily basis to decrease their risk. One of them is to sleep on their side. It is estimated that, if all pregnant women in the UK went to sleep on their side in the third trimester, around 130 babies’ lives would be saved annually. Further information was given on not smoking or taking drugs during pregnancy, attending all ante natal appointments, and alerting a medical professional if there is any change in baby’s movements.

With regards to SIDS deaths, the research suggests that it there is a statistically significant increase in child death if a parent smokes and has baby in bed with them to sleep. Baby should also not sleep in a bed with a parent if they have consumed alcohol.

Secondly, the conference shared information and best practice on supporting bereaved parents after these types of losses. The over-riding themes were:

• “No More Silence”
• “Community Support”
• “Listen”
• “Education”
At the International Stillbirth Conference in Cork last year, it was evident that bereavement care should be consistent for all baby loss parents. There was also a concern that medical professionals weren’t receiving enough or adequate (i.e. modern grief theory) training. Whilst the linear stages of grief myth still pervade, it’s important that we educate professionals and the bereaved alike; that even if there are identifiable commonalities to grief, they do not follow a predetermined pattern. We also know a whole lot more about grief from the past 30 years of research! (Read my book! 😊)
There were three further items that I’d like to mention:
1. One of the outputs of my PhD research is the need for an all-encompassing word for all baby deaths. One of the reasons for this was highlighted at this conference: that those who have lost a baby whilst around 20-24 weeks gestation may be categorised has having a “miscarriage” rather than “stillbirth”. This has lots of implications including the issuance of a death certificate (generally; yes for a stillbirth, no for a miscarriage) and the recognition by society of the significance of the loss. A gestation of that age will result in active labour and the birth of a baby, to have that classified as a “miscarriage” causes grief implications for the parents and can be devastating if their social support is absent due to this categorisation. Secondly, we have seen from research that some individuals identify as “parents” as soon as the pregnancy is confirmed. Seeing the ultrasound scans confirms evidence of a “baby” and subsequent parenthood. This can be the realisation or continuation of all of their future hopes and dreams as a family. To some expectant parents, the loss of a self-identified “baby” (foetus, embryo, or baby) is significant and we believe that all baby loss parents who are affected in this way should receive adequate bereavement understanding and support. We have introduced the word “gestnatal” to our research to encompass all embryonic, foetal, and baby deaths from conception to 28 post birth so that we can focus on the impact of the loss and minimise societal hierarchies of grief (i.e. the ‘ranking’ of importance of the loss as dictated by someone else). We know from research that grief is not related to the gestational age of a developing baby.
2. Another theme that was mentioned during the conference is that of gender differences. In some societies men still believe that they are expected to ‘man up’ or be ‘blokey’. There can also be a perception that men are unaffected because the mother is the one that carried the baby and laboured. However, grief in men following a gestnatal death is highly individualised and as such, they may not receive adequate support. Some men are not as affected as women, but some are and that depends on how attached the man was to the baby. In all cases there is only one way to find out: ask and listen! Another point to note is that men can grieve in an instrumental style and women in an intuitive way, both are grieving in the right way for them. Grieving differently does not mean they aren’t grieving or ‘doing it wrong’.
3. Another PhD Researcher, Livia Sani, gave a very interesting talk on the use of YouTube videos for memorialising stillborn babies. Used mainly in the U.S.A., YouTube videos are increasingly being utilised for public sharing of grief and obtaining peer and social support. It is mainly (70%) mothers who are curating the videos that are on average 5 minutes long, they start with the pregnancy story, notable in colour, with the identity creation of “parenthood” and subsequently tell the story post loss, usually in black and white or in a less colourful way. The videos are usually accompanied by music and religiosity. It appears that the videos “originate from an emotional need of the bereaved parent to be able to declare the existence of their child and their grief, keeping [their] memory alive.”
4. Another interesting presentation was a joint project between Margaret Evans (Paediatric Pathologist), Nicola Welsh (CEO Sands-Lothian) and Kate George (Illustrator). Following stillbirths and SIDS deaths the bereaved parents are asked if they would like a post mortem (autopsy) in some cases. Understanding the delicacy of this situation, the team have produced a very gentle animated film explaining the process and how to obtain more information. This film can be used by anyone and is openly accessible here:
https://sands-lothians.org.uk/post-mortem-animation/
In summary, the key messages for supporting the bereaved were 1. The importance of peer and societal support 2. The importance of medical professionals being trained to communicate and treat the baby loss parents with dignity and knowledge 3. To enact policies and procedures that reduce preventable deaths. I am pleased to report that evidence was produced that showed that an incredible amount of work has been done in the past 12 months to further these goals thanks to a multitude of committed and caring professionals.
If you have any questions or comments on any of the content here please email me at: thegriefgeek@yahoo.com
If you would like any further information on: modern grief theory, what to say to the bereaved (and not to say), what complicated grief is, why the death of a child is different, how men and women may grieve differently, how to support grieving children, the implications of the internet for grieving/memorialisation/digital legacy, how to support yourself if you are supporting the bereaved you might like to read my book “Grief Demystified: An Introduction”. An accessible, research-based book written without jargon for those supporting the bereaved and the bereaved themselves. It is available from various booksellers and Amazon worldwide.
Further support can be found from:
http://www.sands.org.uk (stillbirth, neonatal death)
http://www.sudc.org.uk (Sudden unexplained death of a child)
http://www.simbacharity.org.uk (Miscarriage, stillbirth, baby deaths in Scotland)
http://www.pregnancylossdirectory.com (A U.S site signposting to miscarriage, stillbirth and baby loss support organisations in the various states, Canada, Australia, and New Zealand)

As always, please do not use any of this blog without my consent.
All Rights Reserved Caroline Lloyd 2018

Miscarriage: Claiming the Narrative

It is with kind permission that I’m able to recreate the following:

Back in 1983, I found myself in an office toilet cubicle miscarrying a 14 week old foetus.  I had no idea I was pregnant because I was using birth control.  I had visited the doctor four times in the preceding two months, and each examination and consultation had resulted in a prescription for increasingly powerful pain killers.  I was given no ‘diagnosis’ or ‘treatment’ for whatever was ailing me.  Just a piece of paper for pills and sent away to just ‘get on with it’.  Despite the painkillers, towards the end, the pain was unbearable and the blood was uncontainable.

I walked to my workplace from the bus stop with blood running down my legs, thankfully it was winter, so I was wearing a long, heavy, dark coloured skirt.  I went straight to the ladies’ room.  The fact that I was in work, doubled over in pain, in shock, and possibly denial, meant that I just flushed my baby away and went to my desk to work.  This was pre-internet, so I returned to the doctor’s surgery several days later, was examined, and it was confirmed that I’d had a miscarriage.  I was sent on my way with a different prescription for contraceptive pills.

I was dazed and confused and wasn’t sure what to think or feel; it was an unplanned and unkown pregnancy.  When I finally confided in a friend a few months later, I was told it was a “blessing in disguise” because I didn’t have to choose between “ruining my life by having a baby at 18″ or having an abortion.  At that time, within my cultural environment, this was the narrative.  I was also told it was just a bunch of cells.”

I’m observing bereaved narratives on the internet over thirty years later as a PhD researcher, and whilst there are similar stories to the above that can be found, there has been a noticeable change.  Advances in technology have contributed to changing the landscape; home pregnancy tests allow women to find out they are pregnant almost immediately after an absent period.  With ultrasound scans available to prospective mothers as early as 6 weeks’ gestation, it is now common to see the growing foetus in utero.  These tangible factors allow prospective parents to see their baby; to formulate future dreams of what they will look like, what they will be like and what their lives may encompass, from a very early gestational age.  These medical advances, along with the internet (particularly social media), has changed the narrative in Western cultures almost entirely.

From an occurrence that was historically perceived to be the loss of a ‘bunch of cells’ and the common platitude of “you can always try again”, it is now common to post ultrasound scans on social media pages with the ensuing proclamations and public announcements of parenthood. Following a miscarriage, some of these women are now posting photos of their miscarried foetus’ as evidence of their loss, and as such, there is a growing movement to allow miscarriages to be registered as a birth.  The internet has opened up a dialogue where these women can claim their identities as bereaved mothers.  Within their bodies and their imaginations, these children were real, they existed, and their death is impactful.  Social media has enabled them to form support groups online, particularly within Facebook, and there is impactful peer support on Twitter such as #BabyLossHour.

Clearly not all women are online, not all women grieve a miscarriage, not all women welcome the news of an unplanned pregnancy.  But there is something empowering about claiming your own narrative and having peer support available, whatever that narrative may be.

As always, this content is copyrighted and cannot be reproduced without my permission.