The power of raising awareness…

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

October is always a busy and emotional month for those of us involved in pregnancy and infant loss issues.  This year, the month started off with even more than usual.  (I wouldn’t expect anything less from 2020!)  The world awoke on October 1^st to news of Chrissy Teigen and John Legend announcing that their baby Jack had died.  In an instant, there were millions of families around the world who connected with the raw emotion expressed in their photos and the disbelief that they were leaving the hospital without their baby. 

Those families connected with them because they, too, have had their hearts broken by the tragedy that is Pregnancy and Infant Loss. 

Like Chrissy and John, these families probably received many kind words, but also many comments wondering why they were sharing this experience with the world.  The harshest even criticized how the family is grieving. 

This is why recognizing October as Pregnancy and Infant Loss Awareness Month is so important. 

Every year we get asked why we are making these efforts.  

• No – we are not trying to make the world feel bad.
• No – we are not wanting to trigger the emotions of people who are grieving.
• No – we are not milking the sympathy that might come our way.
• No – we are not ‘stuck’ in our grief.

If you think this issue doesn’t apply to you, you’re wrong.  Everyone knows someone who has been impacted by pregnancy loss and infant death.  Even if you aren’t aware of it.  I encourage you to use this month to find out who among your family, friends, co-workers, and neighbors has been carrying immense heartache silently.  You might be surprised at how much they appreciate the opportunity to say their baby’s name, or even just feel a little less alone in this journey.

Unlike Chrissy and John, most families don’t have the microphone that comes with celebrity.  We use a month like this to find a little extra courage that it might take to share our babies with the world.  We use this voice to help comfort someone else who is grieving.  We use this opportunity to give an expectant family some information that could reduce the risk of them joining this ‘club’.  We use this month to learn more about these tragic deaths so we can hopefully promote research and education toward preventing them. 

Did you know…

• One in four women will experience the death of a baby during pregnancy or infancy in her lifetime.
• Nearly 25,000 babies are stillborn in the United States every year.   Over half of them occur in the 3^rd trimester. 
• Black women are twice as likely to have a stillbirth or infant death as White or Asian women. Native American women also have a higher risk. 
• There are more than 3 million stillbirths around the world every year.  And those are the ones that are counted.  In many countries, especially low-income nations, the infrastructure doesn’t exist to allow this data to be collected. 
• Tens of thousands of families experience early pregnancy losses in the United States each year, but records are not kept on those deaths to know an exact number. 
• Pregnancies after a loss have 2-10 times increased risk of another poor outcome.
• Millions of women around the world are suffering from depression and PTSD directly related to the death of their baby.

Fortunately, this month is also about raising awareness of the reasons to be hopeful! 

• The United Kingdom has implemented protocols that reduced their stillbirth rate by 23%. Star Legacy Foundation is working to bring that protocol to the United States.
• The program at the Rainbow Clinic in Manchester, England and other high-risk protocols can significantly reduce the risk in pregnancies after a loss.
• Support is more widely available for families in the United States than ever before.  We still need progress, but there are visible improvements. 
• Researchers around the world are looking to better identify causes of these deaths and ways to prevent them.
• There are free resources available from Star Legacy for families and providers to support grieving families and to educate everyone about opportunities for prevention. 

Raising awareness is NOT about looking for sympathy.  It is about…

• Offering support to someone who is dealing with one of the most horrible life experiences possible
• Being educated about an issue that impacts the public health and the health of many people around us
• Raising money and support for research into prevention opportunities
• Educating ourselves, health professionals, and future families about how to reduce the risks
• Being a kinder society who sees the pain experienced by so many of our neighbors
• Identifying this health concern impacted by racism and misogyny as another reason to address those issues
• Creating a community of love for those who are suffering in ways we may not recognize

This is why awareness is important.  This is why Chrissy Teigen and John Legend, whether they intended to or not, provided support and awareness for millions of people around the world.  The impact of their story and the stories of every other baby we are missing this month has the power to change the world.  Literally.  We may never know how powerful those stories are. 

Share your stories.  Say your babies’ names.  Ask your loved ones about their experiences with these tragedies.  Use the Star Legacy frame on Facebook.   Donate to research efforts or our program to bring the UK protocol to the US.  Share the Safer Pregnancy card from Star Legacy with someone who is pregnant.  Send a kind word to someone with the courage to share their pain with you. 

You might not know the impact you have.  That is the power of awareness.