Meghan Markle may have focused our attention, but a meaningful treatment for stillbirth exists, and is already showing results.
Despite the pardon for Michael Flynn, the shredded documents in the Premier’s office and the death of Maradona, the real news of today is Meghan and Harry’s stillborn baby. The Duchess’ article in the New York Times, ‘The losses we share’, quickly gained more readers than anything else and was reported on in practically every newspaper in the world.
Stillbirth is a major issue around the globe, with the WHO and Unicef recently putting out research that told us that 1.9 million children that have been in their mother’s womb for more than 20 weeks die there. That is one baby every 16 seconds. 84% of them live in Africa and Southern Asia, and for almost half, we don’t know the cause of their demise. In Australia, there are six every day, which is 2.7 babies per 1000.
That number has been the same for decades. In The Netherlands, though, the percentage has gone from 5.2 per 1000 in 2000 to 2.3 in 2019, a reduction of nearly 60%. 400 instead of 1000 children.
So, what have the Dutch done to achieve this remarkable feat? And what can we learn from their actions?
33% of stillbirths happen in regional and remote areas and the further you are from a big city, the higher the rate. What we also know is that Aboriginal and Torres Strait Islander women have twice as many stillbirths, and that women who were not born in Australia and speak a different language are also more vulnerable.
First some facts. We call a dead baby a stillbirth if it has died after 20 weeks in the womb. Before that, it is a miscarriage. The vast majority of stillbirths take place in low- and middle-income countries. The difference between Iceland, the best scoring country with 1.3 stillbirths per 1000 babies, and Pakistan, with 46.7, is enormous.
Australia’s number isn’t bad, but still 35% higher than the best three (Iceland, Denmark and Finland). In our country, it is much better to live in a major city when you are pregnant. 33% of stillbirths happen in regional and remote areas and the further you are from a big city, the higher the rate. What we also know is that Aboriginal and Torres Strait Islander women have twice as many stillbirths, and that women who were not born in Australia and speak a different language are also more vulnerable. Stillbirths cost the country $681.4 million between 2016 and now. We know all these numbers, because in 2018, a Senate Select Committee on Stillbirth Research and Education brought out its final report.
That report also gave some clues as to causes of stillbirth. Apart from medical problems with either mother or baby, a few societal issues contribute heavily. Maternal obesity, advanced maternal age, hypertension, diabetes and smoking all have a role to play.
But what is also clear is that substandard care contributes to 20-30% of stillbirths, and that there are difficulties with data collection, investigation and classification. In short: we don’t know enough because there is not enough structural research being done, or shared between all layers of care, or states. There seems to be, the report says, a ‘culture of silence’, which is detrimental. Having a dead child carries a stigma and that means that mourning is very difficult. Stillbirths are also not seen as a public health issue and as a result do not receive enough funding for research and education. So, what do the Dutch do?
When a child dies in Holland, the parents are immediately provided with a dedicated person, often a specialised nurse, who takes care of them and makes sure all of their questions are answered. What starts at the same time is what is called a mortality review process. In the first 48 hours, everybody involved does what they can to find out everything possible.
Then, after 4-6 weeks, a formal investigation and review follows. An investigator meets with the parents and their dedicated person and everybody else who played a role. After the investigation, a written document is made, that has all the details.
This is done in the knowledge that parents are often too distraught to really notice what is going on. Throughout, they will be able to ask questions and bereavement care is offered, as well as information about the more practical things they need to organise: insurance, funeral, time off work.
When a child dies in Holland, the parents are immediately provided with a dedicated person, often a specialised nurse, who takes care of them and makes sure all of their questions are answered.
It is a process that has been compared to an air crash investigation: meticulous, detailed, personal and with best practice in mind. Additionally, more money has become available for pregnant women in general. Free ultrasounds are offered, there is more attention for vulnerable women, more education on what (not) to do and because in The Netherlands most women deliver their children at home, midwives are at the centre of this drive to prevent stillbirths from happening in the first place.
Recently, because of advocacy by parents, other things have changed as well. Throughout the country, more than 160 monuments have been set up for stillborn children, often by parents whose children died when stillbirth was still an issue you couldn’t talk about. And since 2018, parents have the opportunity to give their dead baby some legal recognition, by registering their birth and death.
All of this led the Senate Select Committee on Stillbirth Research and Education to propose a number of recommendations. An amendment of the Fair Work Act, for instance, so paid parental leave can be organised better. More data collection and (funding for) research and the establishment of a national biobank, to investigate the causes of stillbirth. Autopsies should be paid for by Medicare, for the same reason, and there should be far more support for bereavement. A public awareness campaign, of course, and more focus on Aboriginal and Torres Strait Islander women, as well as women who were born overseas.
Personally, I am still missing the essence of the Dutch approach, which is centred around the parents. The UK has introduced it as well and their numbers have fallen dramatically. Maybe we need to start talking about it first.
And in that regard, Meghan has helped us out no end.