This spring, Star Legacy Foundation held our first essay contest! Potential entrants were encouraged to send in an essay explaining what they would like researchers and health care providers to know about their stillbirth experience and what they have learned in their grief.
Jackie Sondrol submitted the winning entry. Her essay was printed in the syllabus for Stillbirth Summit 2014 in June and we are pleased to share it with you again here. Her words speak to many of us.
Thank you to everyone who participated. We hope to share the other entries in future issues.
We wish Jackie hadn’t joined our ‘club’ just as we wish none of us had. But, we are certainly grateful to have Jackie’s passion, dedication, and inspiration working with us to prevent stillbirth.
Stillbirth – a description, not a diagnosis. It is only after influential organizations reach this simple conclusion that we will move forward in research and eliminate this word from 26,000 families’ mouths annually.
I’ve had many thoughts over the past seven months since my son, Aiden, was born silently into this world but the one thought that keeps circling back is; Why?
• Why didn’t I know this was a possible outcome in pregnancy?
• Why didn’t I have the same level of care as an acquaintance of mine that was considered high risk only because she was over the age of 35?
• Why didn’t I have more testing as part of my routine care to monitor my baby’s well-being?
• Why does a mother have to experience a loss in order to receive better care?
All of these questions hold a lot of weight but combined they have the power to change a course of treatment or care but it shouldn’t have to come to this. It’s time providers take accountability for their level of care and work towards preventing/managing risks associated with stillbirth.
I’ve thought about the risk factors associated with stillbirth a dozen times. I didn’t have any; except now that my baby has been stillborn, I have one risk factor that makes me at risk for a stillbirth and not just 3% like I was before but according to one study; an increased risk up to ten fold. Why then, if every expectant mother has the same risk of having a stillborn, wouldn’t every expectant patient be considered high risk? If we do, in fact, have no indicators that a baby is at risk for stillbirth, then why isn’t a higher level of care given to the fragile condition of the baby in the womb and the expectant mother?
I believe; they are looking in the wrong place. The risk factors give providers a guideline to determine if certain women may be at a higher risk than others but, it seems that more often than not, the baby is the one that needs to have their own set of ‘guidelines’ to be monitored as well. How do we prevent/manage something if we aren’t even taking the time to look for it?
It all begins with education and awareness. In the weeks following the death of my son; my nurse told me, “These things usually don’t happen and especially not in the third trimester.” It was then that I knew education was lacking even in the medical field.
This realization was the start of my own awareness efforts. I started Aiden’s Wings of Awareness to bring forth awareness regarding pregnancy and infant loss and to educate others about how often it occurs, needlessly, in the United States each and every day. If even one life can be saved, it is worth every minute. I challenge you to be your own advocate.
“Every life, no matter how fragile or brief, forever changes the world.”