The power of awareness…..

August 22, 2016
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by Lindsey Wimmer, RN, MSN, CPNP, CPLC

I think almost every parent I know who has experienced pregnancy or infant loss has been told,

“Sometimes these things just happen.”

It is supposed to make us feel better because it isn’t our fault and nothing could have been done to prevent it. And to some people at certain points in their grief journey, it is comforting. However, to me right now – it is infuriating.

It gives me the feeling that there is no desire to improve or do anything about it. To a bereaved parent like me, it translates into – My baby isn’t worth the extra time, energy, resources, etc. That is insulting and false. Every baby is worth the effort to give them the best chance at a happy, healthy, productive life with a family that loves them more than words can describe.

I know that every health professional working in this area would love to eliminate these tragedies.  I believe completely that they do want to do something about it.

So why is this platitude used so often? 

Part of it is our societal discomfort with grief and a need to smooth everything over and make it all better. We hear platitudes all the time trying to minimize shocking situations because looking the horror in the face is often more than we are equipped to do.

The other part of it is that medical professionals have been trained that we can’t pursue theories or potential interventions until they have been proven many times over.  There is good reason for this approach and it has served the public well many times.

However, there is also a benefit to acknowledging our short-comings and having an honest dialog rather than repeating clichés and hoping it will make things better.

Here is the bottom line for stillbirth and related poor pregnancy outcomes:

  • We don’t currently have a magic bullet that will make it go away. We don’t even have the answer to ‘why’ this happened for the majority of families. We are far away from a simple, inexpensive solution wrapped in a pretty bow and served on a silver platter.

But that doesn’t mean we have to sit back and accept that “these things just happen.”

There are little things that we can ALL do.  And it starts with awareness and education.

Why?  Because information is power.

It doesn’t mean we have to have all the answers.  Even the discussion is beneficial.

We have heard from researchers conducting prospective studies that their stillbirth rates in the study group are significantly less than expected.  This means their stillbirth rate was less than the rest of the population that is not in the study.  It appears that knowing babies can die and that people are trying to figure out why/how to stop it – has some preventive effect!  That is a really simple and inexpensive method.  It isn’t 100% by any means and we may not understand how or why it works – but I’m happy with the improvement.

Norway, the Netherlands, and New Zealand have seen a reduction in their stillbirth rates by encouraging mothers to monitor their babies’ movements and discuss them with their health providers.

In Scotland, an effort led by SANDS was able to reduce their stillbirth rate by 18%.  In fact, their next report is expected to show a decrease by 20% in the last three years!   The three things they did for this result?

  1. Teach and encourage mothers to monitor their baby’s movement
  2. Screen for fetal growth restriction with more ultrasounds and growth charting
  3. Encourage pregnant women to come in immediately if they noticed a change in movement or have ANY concerns

If we could do something similar in the US, there could be nearly 5,000 fewer families planning funerals for their babies next year!

So how do we make this happen? 

For health professionals or anyone else working with expectant families, it’s a change in how we talk about it.

To my health professional colleagues, please have a challenging but honest conversation…….

“Everything looks good right now, but there are some things about your pregnancy that could be a problem for you or your baby.  Things like (advanced maternal age, obesity, too much/too little amniotic fluid, two-vessel umbilical cord, African-American or Native American heritage, gestational diabetes, or whatever the specific risk factors are) can increase the risk of your baby dying before birth.  We don’t understand why, but here is how we’re going to work together to reduce those risks as much as possible.  I would like to do a few tests at your visits to (watch the baby’s growth, the amniotic fluid levels, the baby’s response to stress or contractions, signs of infection, etc).  And, I need you to be our monitor whenever you’re not here in the office.  That means I want you to pay attention to this baby’s behavior and personality.  When is he/she usually active or not?  What types of movements or activity do you notice most or at certain times?  I’ll ask you about these things at each visit, but I also want you to call my office or go to the hospital if at any time you notice a change in your baby’s behavior; you have symptoms like bleeding, cramping, fever, unusual pain; or you are experiencing anything that has you concerned.  This includes your gut instincts.  Maternal intuition can begin now and I want you to tell me how you and your baby are doing.  Do you have any questions?”¹

This creates a partnership with the parents and has the potential to prevent poor outcomes!  It is respectful of the parents and helps them become well-informed participants in their care.  While it is obviously something an OB or midwife would say, we can all encourage these same parents to know their risk factors and be aware of any signs baby may be offering.

Ignoring perinatal loss doesn’t make it go away.  We need to attack it head-on to make a real difference.  I believe that parents partnering with health professionals in this way will have a dramatic effect on our stillbirth and other poor outcome rates.  I hope you’ll join us for this partnership!

¹ Star Legacy Foundation’s See Me, Feel Me patient education tool is a good resource for obstetrical providers when having these conversations.  Contact us at info@starlegacyfoundation for a free copy.

 

 

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