Lessons learned from the Stillbirth Summit 2019

By Lindsey Wimmer, RN, MSN, PHN, CPNP, CPLC, Executive Director

The Stillbirth Summit is one of the most inspiring events we host at Star Legacy Foundation.  It’s my personal favorite because it addresses what I needed to hear shortly after my son was stillborn – that there are incredibly talented, intelligent, and passionate people working hard to make stillbirth prevention a reality.  It is true that we don’t have a ‘golden egg’ that is going to make this vision an easy or simple task.  But, that is why I’m so excited when we are ablt to gather so many players in the same room.  It will take all of them – and all of us – to see this vision come to light. 

In the final session, we talked about the packaging of many concepts that are developed or being developed through science.  It is the idea that we have to attack this issue from all angles knowing that all play a role depending on the specific circumstances.  We are so excited to be working on this concept and we’ll be sharing more at a later time.  But, for today, I wanted to look at some of the concepts I took away from Stillbirth Summit 2019!

First and foremost – the phrase that summed up the entire conference for me – came from Dr. Catherine Calderwood, the Chief Medical Officer of Scotland.  I still have chills thinking about her telling us, “Don’t let them tell you it can’t be done.  Because it can.”  And, even better, she had statistics to prove it!  The results that Scotland has seen over the last few years are truly inspiring and give us many points to consider when trying to replicate their success.  No more excuses! 

We also heard from several presenters about the need for collaboration.  This is true not only within the scientific and medical fields, but with the families, policy makers, and financial influencers.  Stillbirth prevention needs to be a societal goal.  Many examples showed us that each segment is offering challenges, but can also offer support and progress. Social determinants of health continue to be a major factor for all poor outcomes and will only be addressed with collaborative and multidisciplinary work. 

There is more known about the bereavement process after perinatal death than ever before.  We need to have a better understanding of the trauma families endure and the methods that can help them in their grief to provide quality bereavement care. 

Pregnancy After Loss is a combination of the intense grief perspective and high-risk medical perspective.  New research is offering more specific ideas for how to help families through these transitions as well as the protocols that are reducing rates of poor outcomes in subsequent pregnancies.  I am so grateful to the Rainbow Clinic in the UK for putting this work into the literature and sharing your program so freely.  As we hear about other providers around the world who are adopting that protocol or portions of it, we know many more families are receiving the kind of care they should. 

Recurrent miscarriage is often overlooked, but is not as benign as some would think.  The use of aspirin and better testing are just two ways providers are starting to help families.  Pregnancy and infant loss is a continuum and the more we learn about all points on that line, all families will benefit. 

Respect is needed for women and their families throughout pregnancy and delivery.  This includes providing truly informed consent with honest conversations about all risks and options.  It also includes listening to mothers and believing them when their intuition is sensing things that technology may not. 

Providers will have the best information and view of the entire pregnancy when they utilize available tools and combine that with information from the mothers.  Those combinations can include:

• Encourage women to go to sleep on their side in the 3^rd trimester
• Refer women for sleep studies and consider treatment, particularly those with significant snoring or sleep apnea, high BMI, high blood pressure, or a history of poor outcomes
• Encourage and teach mothers to monitor fetal movement.  They should get to know this baby and be monitoring not only the frequency, but also the strength, pattern, and other characteristics.  And if they notice ANY change, they should report it to their providers immediately.  And these concerns should be investigated immediately.  Each time a mother reports decreased movement in a single pregnancy, the risk of stillbirth increases. 
• We need to be better at identifying growth restriction.  Serial ultrasounds with growth charting can provide valuable information.  Small babies in the nursery may be preferable if they are not thriving in their intrauterine environment. 
• Umbilical cords can and do cause many stillbirths.  Yet, there is great controversy around the research and data – especially with regard to monitoring and management.  The cord is a significant part of every pregnancy and needs to be evaluated and monitored. 
• Measuring the volume of the placenta can be a tool to predicting babies who are needing more oxygen and nutrients than their placenta can provide.  Placental concerns are a major issue in many stillbirths and this may be one way to better identify those concerns before or during growth restriction or before stillbirth. 
• Timing of delivery is often the only intervention available when a vulnerable baby is identified.  Early delivery may be a perfectly-timed delivery if there is concern about the baby or mother’s well-being. 

Finally, stigma is alive and well.  It limits support that families receive in their grief, restricts funding available for research, promotes professional fatalism, fuels political concepts, and marginalizes those who are touched by stillbirth. 

It is impossible for me to do justice to the two dozen presentations at the Stillbirth Summit.  There is too much amazing science and hard work to summarize here.  But my notes have come full circle.  We start and end with the realization that prevention and better care is possible.  Spreading that concept is essential to realizing our vision.  If we as individuals, health professionals, advocates, families, and members of society acknowledge that these deaths are significant and that progress is possible and necessary – then the how is less intimidating.  Many other countries and many researchers are giving us the tools and information to address the how. 

I know this is more than a fairy-tale dream.  Since the Summit, I have heard from dozens of health professionals who took pieces of the presentations home with them.  And they are using what they learned to benefit their patients.  They did the hard part by opening their minds to the idea that better is possible!  After that, the rest is much easier. 

Some of the stories include:

• putting protocols in place to screen obese women for sleep apnea
• inducing a mom at 37 weeks after 3 episodes of decreased fetal movement
• saying the word ‘stillbirth’ to patients when there are concerning risk factors present
• being thanked for teaching a mom how to monitor movement and when to report changes
• increasing monitoring for a mom with multiple risk factors
• testing an older mom after a miscarriage earlier than usual and finding conditions that need addressed

This is how change happens and how progress is made.  THANK YOU to all who attended and came with open minds.  You inspire me and give me hope.  And that is what the Stillbirth Summit is all about.