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Stillbirth – the need for partnership…..

February 9, 2012 Leave a comment Go to comments

by Lindsey Wimmer, MSN, CPNP

I am often asked how the Star Legacy Foundation developed its focus and mission.  It actually is fairly simple.  In my “real” job, I am a nurse practitioner.  I have always worked in pediatrics, so I don’t pretend to know women’s health well.  But, I do consider myself an educated person who has a better-than-average understanding of medical decision making and physiologic processes.  However, when I was told that my first child would be stillborn, I was as shocked and blind-sided as anyone.

As I began to process our loss, I became embarrassed that my own profession appeared to let me down in such a significant way.  When I had this discussion with a variety of other health care providers, I could see the logic in many of their answers.  A common phrase in my head was, “Yeah, but…”.

These discussions led me to a realization.  The parents and the health care community really do want the same thing – healthy babies and healthy moms.  This is a bridge that connects the two groups, but it spans some murky, turbulent, crocodile-filled waters.  As a member of both groups, I saw the need for everyone to get on the bridge and work together.  We have been overwhelmed by the number of people who identified with our mission and have joined us.

Parents look to the medical community for advice.  For many people, obstetrics is the first time they have needed continuous or extensive medical care and may feel uneasy in this environment.   For many generations, we have been “trained” to accept the advice of our physicians without asking questions or raising concerns.   We are not the “experts”, yet we must live with the consequences of any decisions or outcomes made.  There is an enormous element of trust in this relationship.

The health care community is charged with an almost-impossible task.  Medicine is not a black-and-white science and there are not always right or wrong answers.  Yet, we expect perfection for every patient, every time.  Each decision made in health care requires an evaluation of multiple factors and an attempt to balance the pros and cons of any choices.  We cannot see, hear, or feel what our patients do and we rely on them to give us information we may not even know exists.  Further, we must consider the ethical, legal, and financial aspects of each decision made.

Our society has treated stillbirth as a taboo subject for too long.  This reaction complicates the families’ grief and limits the information available to healthcare.  This is where the two groups NEED to start working together to enact change.  We truly believe awareness is essential.

To that end, the Star Legacy Foundation has several programs in place to attempt to bridge this gap.  Our education projects involve methods to get the latest information and research to physicians, nurses, midwives, clergy, childbirth educators, social workers, psychologists, expectant families, and anyone else who interacts with pregnant women and grieving families.  Our See Me Feel Me campaign (currently under revision)  is a grass-roots effort to encourage women to trust their instincts, get to know their babies before they are born, and to advocate for their children within the health care system.  It also provides information to health care providers about the latest concepts in stillbirth prevention.

Our research division is focused on supporting and encouraging research to prevent stillbirths.  The lack of awareness and funding in this area has led to very little work (relative to other areas of medicine).

This past fall, we hosted the Stillbirth Summit 2011 to bring together 12 researchers from around the world to share their newest findings.

We are also in the process of designing a research survey, the STARS study, which will hopefully begin to put numbers to the experiences of pregnant women.  To date, these stories are considered anecdotal, but we believe it will prove to be more than that once these experiences are counted.  We also intend to raise awareness about the research/education potential of expanding and encouraging the stillbirth evaluation.  Better information for the families and the health care providers is needed for this to happen.

We feel that a tide is turning.  Parents are more empowered than ever before to make sure their concerns are heard.  The medical community is more open than ever before to hearing ideas and suggestions.  The taboo of stillbirth is slowly melting away and will allow for better research to give us answers.  Open communication and understanding can enhance these changes and ultimately reduce the number of families and healthcare providers facing this tragedy.  That would be good news for all of us.

For more information on the Star Legacy Foundation or our programs, please visit our website, www.starlegacyfoundation.org, or email lindsey@starlegacyfoundation.org.

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  1. February 9, 2012 at 4:09 pm

    Excellent article, Lindsey! Very well said information for all of us 🙂

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