Today a stillbirth awareness campaign was launched
Its been a while in the coming so ordinarily a launch like this would give me cause to celebrate instead as a bereaved mother, stillbirth researcher and clinician I am shocked, horrified, disappointed and to be frank... downright angry. Here is why:
The main video can be seen here https://youtu.be/p6-A1k5gk2A .
WARNING its likely to be triggering for bereaved parents
• The video shows a clinician struggling to find a fetal heart (FH). As a bereaved mum I fear this scene will be very triggering for those who have not had the happy ending that this couple had. I also wonder if it actually gives a stillbirth message to any naïve / uninformed pregnant couples who have not had a stillbirth, I would suggest not. To me I would think the main message is “don’t worry if your clinician can’t find the baby’s heart because after a moment they will”….heart stopping (no pun intended…) certainly but I am not sure how this translates to a message about stillbirth or stillbirth awareness? However, for the couple who has experienced stillbirth it recreates that awful moment we all share, of a clinician not being able to find our baby’s heartbeat, it instantly and traumatically sends us back to that moment when our lives changed forever, so when this airs it is likely to be repetitively traumatic for the family who have suffered a stillbirth while probably ineffective in giving the right /anticipated awareness message to families who have not.
• As a clinician I am concerned that this actually isn’t depicting stillbirth because all it is showing is a moment of a clinician not being able to find the fetal heart (FH). Further, in my experience, what is depicted simply would not occur. While momentarily being unable to find the FH for a CTG is an everyday occurrence, especially for larger women or an inexperienced clinician, this video actually depicts clinician incompetence because if you can see the baby’s anatomy via ultrasound (with a fetal head the size it is) , you can easily locate the chest and therefore the heart. I realise that such a video doesn’t have to be clinically correct BUT in this case it probably should be because the campaign is supposed to be complementary to the Safer baby bundle campaign aimed at clinicians. If the producers are expecting clinicians to promote it in ,say, an antenatal clinic I would argue that most clinicians will not want to show something as inaccurate as that!
• As a clinician I would also be concerned that the instruction to call providers immediately your baby’s movement change is very likely to inundate care providers with unnecessary presentations. This is because a message such as this is actually disempowering, it’s important to empower women with knowledge that they know themselves and their baby best. So informing her that getting to know her unborn baby is vitally important and what needs to be “immediately reported” is not any old change but a change that concerns HER. As a StillAware leaflet puts it “if something feels irregular” if the mother notices her baby’s movements changing (getting stronger) towards the end of pregnancy then this isn’t a “change“ to immediately report and be seen about, in fact it is a reassuring sign that all is well.
• As a researcher I am concerned this isn’t giving correct evidence-based information “sleep on your side after 28weeks” is incorrect it needs to be “go to sleep on your side…” this might seem pedantic but it is important because there are more and more reports in social media of women thinking they need to sleep all-night on their side which is anxiety provoking, likely deprives them of a restful sleep AND is impossible to do, everyone changes position while asleep!
The accompanying videos are also inaccurate and actually just plain wrong. For example:
- Smoking is actually NOT one of the biggest “CAUSEs” of stillbirth. I am unaware of any research which reports smoking causes stillbirth. It’s not mentioned as a cause in our AIHW data. https://www.aihw.gov.au/reports/mothers-babies/stillbirths-and-neonatal-deaths-in-australia/contents/overview-of-perinatal-deaths/timing-causes-and-investigation-of-perinatal-deaths
- While smoking is certainly a risk factor for stillbirth, even then the risk is modest. With previous stillbirth, change in fetal movements, fetal growth restriction, no antenatal care, settling to sleep supine, pre-existing diabetes, assisted reproduction, pre-existing hypertension, pre-eclampsia, maternal obesity and maternal age ALL having demonstrably higher adjusted odds ratios /relative risk than smoking.
- The “if baby feels still” https://preventstillbirth.org.au/if-baby-feels-still/ is catchy and nicely matches the campaign title but is actually dangerous advice. If the baby feels still then I would think it means the baby is already deceased so if the mum waits for the baby to "feel still" then she has waited too long. Further this advice overlooks characteristics of fetal movement that are other warning signs that all might not be well, such as a change in the strength of her baby’s movements (getting weaker over time) as well as a change in pattern (e.g. not moving at bedtime as usual)
I reiterate that I am not an expert but to me it’s pretty logical when planning a public awareness campaign that the first step would be to tell people about of what it is you want them to be aware? IMHO this ‘campaign’ falls short of the mark because while stillbirth is mentioned and the figure 6-per-day is given, the audience are not told what stillbirth actually is. It really can’t be assumed the general public know what stillbirth is, in fact we have good evidence from other high income countries and also some from Australia that the general public actually don’t know what stillbirth is and that there are MANY widely held myths and misconceptions. Some of these are that it is similar to miscarriage, that it’s inevitable, nature’s way or that the woman did something wrong. I would have hoped that a campaign that claims to be addressing stigma and raising awareness would first focus attention on correcting these myths before launching into giving information about how to reduce risk.
It is also my opinion that to raise awareness you need to make your campaign relatable. What I mean by that is that the expectant family should see themselves in the scenario. When I showed this video to my husband who is a bereaved dad but has NO medical knowledge…..NONE. He made two pretty telling comments he asked “where is the male point of view portrayed?” and he also asked “Why are they showing a miscarriage ultrasound?” When we lost our daughter Emma he felt largely ignored, and still does actually. This ad does nothing to reassure male partners that we now fully understand that men are impacted by stillbirth too.
I’m no expert but it would seem to me that if you are aiming to portray stillbirth then showing an ultrasound and relying on those with no medical knowledge to understand what is going on is a bit of an ask! If you are going to raise awareness then you need to tell the audience that stillbirth is a baby dying not imply that its trouble finding a heartbeat. To address public awareness don’t you need to bite the bullet and actually portray the reality of stillbirth? Rather than showing an ultrasound just let he audience hear the words “I’m so sorry there is no heartbeat your baby has died.” To show it can happen to anyone why not depict this message being given to 6 different couples who together represent the full diversity of Australian multiculturalism.
So in sum, as an Australian tax payer I’m wondering if the dollars used to create this campaign have been efficiently and well spent, as a bereaved parent I know that I will be retraumatised each time it airs and hundreds of thousands of other Australians like me will be too, as a cis woman I am concerned that male partners have been ignored, as a clinician I am concerned this will provoke anxiety rather than empowerment and as a researcher I am sad that the attention to evidenced-based detail needed is absent or inaccurate.
Ordinarily I would hold my tongue but on this occasion, I feel compelled to speak out because of my concern that this campaign does very little to raise public awareness about what stillbirth actually is and that such information needs to come FIRST. Instead I have real concerns it will do much to provoke anxiety in pregnancy and distress for bereaved families. I for one can’t in good conscience stay silent about that!