I can clearly remember the first time I stood in front of a room full of researchers and scientists to tell a snippet of my story as a graduate NICU and bereaved mom. It was the summer of 2010, and the CDC was holding an advisory meeting about immunization practices for infectious diseases. I listened for hours about the statistical significance and economic impact of lung disease in premature infants. I had no scientific or medical background but was there to take advantage of a three-minute slot for public comments; only three-minutes to share the stories of a dozen children affected by prematurity and lung disease.
I was one parent from a tiny non-profit in Georgia pleading with the audience to understand that every statistic is the life of a child. I was adamant that they do not measure a child’s life in dollars & cents, and encouraged that they make a real, human connection between these children and the charts & graphs they reviewed throughout the day.
When my time ended, I was feeling slightly defeated. I wondered, “Did they hear me? Did my words matter?” As I drove home afterward, I pictured how much more effective my story could have been if there was an army of NICU parents behind me holding a large photo of their child. As a group, I wondered, would our stories engage the medical community and allow us more influence? What would happen if we created an alliance of NICU parents to reach people as a singular collective voice speaking up and out for what is best for NICU babies and their families?
Nine years later, the shift is palpable. Thanks to the tireless efforts of Preemie Parent Alliance members across the country and around the world, parents are now embraced and invited to speak and collaborate on the national and international stage. Those in the Maternal Infant Health community recognize the significance and impact of the NICU parent voice, and we’re known as key stakeholders and valuable sources of information. We have a long way yet to go before we see NICU Parent Professionals universally viewed as equals, but we have made significant progress. For this, I am incredibly proud of the individuals with whom I have the privilege of working.
To that end, I can hardly find the words to express the depth of my gratitude to The Journal of Pediatrics
for recognizing and embracing the significance of stories in research. This month’s publication features the article “Remembering the Power of Stories in Pediatric Research,” co-written by myself and PPA members, Deb Discenza, Founder of PreemieWorld
, and Jennifer Degl, Founder of Speaking for Moms & Babies
. In this article, we share the reality of our lives with our preterm infant daughters and the challenges we faced as a result of their lung disease.
To be published in a scientific journal of this magnitude is a defining moment for our network of NICU Parent Professionals. I hope this will not be lost on the investigators and professionals working so hard to find cures and treatments for the many medical issues our fragile babies face. It is a moment that should inspire everyone to embrace the power of your story.
As Deb so poignantly wrote:
“Within studies, the clinical statistics automatically mask faces, remove stories, and keep the focus on sterile data. We suggest that stories provide a bigger picture. Just as oral histories carry wisdom from one generation to another over the ages, so do the stories of these three girls.”
Thank you to the Journal of Pediatrics for this opportunity and Deb for so expertly weaving three different stories together to form a beautifully composed piece.
Never forget your story matters. Never stop perfecting the craft of sharing your story in a way to affect change. It often takes time, but together we are doing just that.
Now through May 14, 2019 you can access the full article here: