Today I was sad to see that my fears expressed on this blog in April 2020 were confirmed with this story in the Sydney Morning Herald. Reporting that we now know stillbirths in NSW rose to their highest rate in more than a decade during the first year of the pandemic.
Professor Jonathan Morris (Professor of obstetrics) said the rate was up from 8 per thousand in 2019 to 9.1 per thousand in 2020. Describing this rate rise as “slight”. Later in the article it was pointed out that this equates to 100 more families in NSW alone who suffered a stillbirth in 2020 than in 2019. I don’t know about you but I’d be willing to bet that none of those families , nor indeed anyone of us who has suffered a stillbirth, would describe a 100 more deaths in just one State as a “slight” rise
Why did this rate rise occur? The usual suspects are blamed including the move from face-to-face consultation to telehealth, strain on maternity services  and my favourite (NOT) the mothers fault delaying ‘presentation” to hospital because of being  “anxious” to attend.  The report adds that it was “too early to pinpoint a cause”
This is where I beg to differ. Far from it being too early it is WAY too late to try to pinpoint a cause. Why? Because the rate data is two years old. Even if a cause was pin pointed and mothers were        blamed for delaying presentation what can be done about it now? If that cause was “pin pointed” at the time then strategies and education could have been put into place. Now its WAY to late to act even if a cause could be pinpointed
I have heard time and time again a “wouldn’t that be lovely” in response to my and others requests to collect and quickly report stillbirth rate data. Jurisdictional boundaries and regulations  and MANY other issues are cited as “reason’ why we cant get data on stillbirth rate until it is WAY too late to know if telehealth, strain or anxiety have anything or everything to do with it.
But is it actually possible to get that information before 2 years has passed?  Certainly, I point you to what we know about Covid -19 by way of example. We know , rates from every jurisdiction within 24 hours, not only that we know ages of victims and even if they have “underlying conditions”. This information has enabled us to learn so much more about Covid than we would have known if all the data we had was 2 years old! The information includes what we need to look out for and how to protect ourselves. Has this information evolved over the course of the pandemic BECAUSE of our immediate access to information?  YOU BETCH YA.
 Information we have from our Covid experience tells us that we can, and indeed we MUST collect and report data about stillbirth rate FAR more frequently than we currently do and IF we do we will discover further risks and ways to protect women and families from stillbirth in time to take steps to actually address the likely problem AND to see  the effect of any changes we make !
I challenge those who are in a position to influence the collection and reporting of stillbirth data to make it available as quickly as they can in much the same way as Covid deaths are reported.  Daily if possible, weekly at the outside. This will have the combined effect of raising community awareness of stillbirth but also allow us to make any changes to the way antenatal care is delivered across Australia in response to real-time data rather than trying to shut the stable door 2 years after the horse has bolted.  
 

• 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)

Overall message
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!

Today I read that Monash university have been successful in gaining several NHMRC ideas grants. Congratualtions to them!!
One of these is $1M to fund
Soft wearable patches for stillbirth prevention
I quote from the press release: 
Professor Wenlong Cheng from the Faculty of Engineering will lead a project to develop next-generation soft wearable patches that use artificial intelligence (AI) to help prevent stillbirths.
This project aims to directly tackle this unmet clinical challenge by revolutionising the way fetal movements are evaluated through the development of a compact, soft, inexpensive, smart patch, which can automatically detect and report fetal movements anytime anywhere taking advantage of the world-leading advanced electronic skin sensing technologies and AI.
“If successful, this will be world-first wearable technology enabling out-of-hospital screening with the penultimate goal of stillbirth prevention,” said Professor Cheng.

Sounds exciting right?
But I have my concerns because as good as AI may be it can’t replace human intelligence, neither should it. Further AI can’t be programmed for maternal intuition or human response.
I have often heard mothers report a ‘decrease’ in their baby’s movements which machines like a CTG dont seem to detect. This is because it is often the case that the woman is reporting not so much a decrease in frequency but concern about a change. In my experience women will often say “I cant put my finger on it but my baby's movements just feel different”
The algorithm for this new device is going to have to include strength, frequency and pattern all of which have been shown to be important in fetal wellbeing. Pattern includes time of day the baby moves and their usual response to things like hearing a siblings voice, or startling when there is a loud noise. AI is good but can it possibly be that good ?
I am not suggesting for one minute that this patch wont be useful but I do fear that we as a society tend to put our trust in machines  and technology . In the case of maternity care this is often at the expense of trusting the woman, her baby, her understanding of her baby and her maternal instincts. PROVIDED this patch is used as a supplement to all then it can be useful however I suspect that it may be yet another device , in a long line of devices, that are overly relied upon and hence further disempowers the pregnant woman.
 I hope that we don’t EVER see this patch marketed as “better than a woman” but I suspect we may. I hope I am wrong…we shall see!
 

Today I read this interesting article:
https://www.chadwicklawrence.co.uk/legal-news/rise-stillbirths-pandemic-prompts-safety-review/
which starts by saying: 

The Healthcare Safety Investigation Branch (HSIB) has begun a national review in England following a rise in stillbirths between April and June, during the peak of the coronavirus pandemic, when there were 40 stillbirths recorded after the start of labour, compared with 24 in the same period last year.

There is a certain skill in the search for answers as to why an event might have occurred without pointing fingers and causing the victim to feel blame. For example asking open ended questions like:

• How did it happen?
• Can you tell me about it?
• Help me to understand…I don’t know what this means?
• Can you tell me more?
• What can be done to help this situation?
• Can we figure out how to solve this? Etc

 
There is also a way to inquire about something happening that immediately causes the victims of the event to feel somehow responsible and blamed. Proposing you already know why something occurred ahead of what the investigation might reveal is one of these.  
Unfortunately of the two ways its seems that the second is being employed in this instance.
While of course it is wonderful that they are investigating this spike at all it IS concerning that the victims of this spike in stillbirth are already being blamed through reported comments  like:  
Pregnancy and childbirth experts say this may have been due to a delay in women seeking care.
Dr Edward Morris, president of the RCOG, said antenatal care was “essential” and urged all women to attend appointments.
He went on to say
Dr Morris said “This may have been due to confusion around whether these appointments are essential, fear of attending a hospital or not wanting to burden the NHS.
“We have consistently advised women who have concerns or worries about their or their baby’s health – including the baby’s movements – should seek medical advice from their midwife or hospital immediately.”

As I have said before on this blog the spike in stillbirths that has occurred globally is multifactorial but IMHO is MUCH more to do with maternity services not being adequate, antenatal care taking place remotely or not at all and women not being informed by their care provider what to do if they are concerned in the context of the pandemic.
I refer back to comments made by Australian women to back this up :
Maternity care has been stripped back to if you’re alive and so is the baby, that'll do.
I haven't been allowed to have any face to face appts at the hospital, I can’t be thoroughly checked over the phone.
Worst care during this pregnancy

Hopefully this national UK review will identify ALL of the factors leading to an increase in the stillbirth to benefit not only UK but other high income countries and not simply lay the blame at the feet of the victims.  

Wait..what?
 
Yesterday there was a story in NewsGP (the newsletter of the Australian college of GPs) responding to concerns that Australia might be experiencing an spike in Stillbirths in Australia.  
The headline read “Significant increase in stillbirth at a UK hospital during pandemic” and the by-line was “But experts say there is little evidence to support the idea it may be happening in Australia.”
The experts were Dr Alex Polyakov, a senior lecturer in the Department of Obstetrics and Gynaecology at the University of Melbourne and a consultant obstetrician, gynaecologist and fertility specialist at the Reproductive Biology Unit at the Royal Women’s Hospital in Melbourne and Dr Wendy Burton, Chair of the RACGP Specific Interests Antenatal and Postnatal Care network. They both agree that they don’t believe Australian hospitals are seeing a similar rise in stillbirths. I hope they are right!
What has led them to this belief? Polyakov’s “anecdotal evidence from working at a tertiary hospital and a fairly busy private practice, we haven’t observed such [a] major increase in stillbirth over the past few months” and Dr Burton going so far as to ask Dr Michael Beckman from Mater Mothers Hospital (MMH) in Brisbane, Australia’s largest maternity hospital, to review their data Dr Beckman reported lower numbers of stillbirths in the period from February to June 2020 at MMH.’
If one concerned Doctor can ask another to have a look at their stillbirth rate in one hospital in Australia then I would call for every maternity hospital (both public and private) as well as every private provider conducting births at home to provide data for this six month time period AND not only that …if we can do that once then I would suggest it can be done regularly and systematically from now on.
Dr Burton agrees “the numbers [from MMH] are small and we need to look at larger population data, not individual hospital event rates’
One of the amazing things about the data that we have had access to during the Covid crisis is that it comes to us daily, we all know how many tests were done just yesterday, how many were positive, how many are in hospital , how many are in intensive care and what age group they are in. This has enabled us to know as much as we can about this virus and as the months have gone by we have learned a great deal about it and thus how to protect ourselves from it in a way that few countries in the world have managed. In contrast we are flying totally blind with respect to stillbirth while, of course, there is some reassurance in one hospital’s data and anecdotal report we really do owe it to our pregnant women to do better than that and find out what is actually happening to our smallest and most vulnerable Australians.
The other thing that is welcome about this story is the concerns Dr Polyakov shares about telehealth:
Dr Polyakov harbours further concerns about the shift away from face-to-face appointments during the pandemic, and its potential effects on pregnancy outcomes.
‘You can only do so much via telehealth,’ he said.
‘For example, you can’t measure blood pressure and you can’t assess fetal movements or fetal heart rate with telehealth, and so this is something that needs to be kept in mind when we change the patterns of antenatal care.’
Dr Polyakov believes the routine schedule of antenatal appointments should ideally be kept at their usual intervals despite the pandemic.
‘And those appointments should really be face-to-face because otherwise there will be some women who will slip through the net and will have adverse events happen to them because they haven’t seen a doctor face-to-face for months,’ he said.
‘So my advice for [clinicians] who participate in shared antenatal care is to make every attempt to stick to the recommended appointment times or schedule, rather than doing it via telehealth or doing it less frequently.
‘My personal feeling is that because antenatal care is designed to minimise stillbirth and various other complications, it really should be done unchanged irrespective of the COVID pandemic.’
 
Back to the headline of this article, we have “little evidence” that a spike in stillbirth is happening in Australia perhaps because we haven’t really looked. BUT, we do know that women are not seeing their care provider face to face and we know that face to face antenatal care IS designed to minimise stillbirth so it absolutely should be being done unchanged irrespective of the COVID pandemic. Because there is no doubt that antenatal care has changed we really do need to check that if we haven’t inadvertently caused an increase in stillbirth.