World Prematurity Awareness Day
Today is World Prematurity Awareness Day. All throughout the month, I’ve been sharing facts, statistics, and experiences that have been defining moments in our lives as parents, preemie parents. I’ll continue to do that for the rest of November, but today, I wanted to talk about why raising awareness is so important.
Ten percent of births in the United States are premature, meaning they take place before 37 weeks. Prematurity is the leading cause of death in infants and in children under age five, and is also a significant cause of disability. And yet, we rarely discuss prematurity. Not on the news, not in magazines, not across social media, and when you do research, you find a blasé line that says something like, “the majority of preterm survivors are found to do well and to live fairly normal lives.”
I do not doubt that this is the reality for some families. I’m grateful for all of the advances that have made this a possible outcome. The truth is, though, that this isn’t the case for a lot of children and it’s not necessarily the whole truth, but more of a sugarcoated dose of reality. The “fairly normal lives” that are lived sometimes look like ours: riddled with doctor’s appointments, spending more time in therapies than as a family, learning how to properly handle medical equipment, driving to and sitting through countless tests, evaluations, and studies, navigating lifelong diagnoses, enduring days filled with physical pain that a toddler should not have, advocating for services, reading reports about deficits and delays, stressing about milestones and growth, and dealing with anxiety for the future.
These are difficult subjects, and statistics surrounding death and disability in conjunction with prematurity can be especially uncomfortable, but by not talking about them, we erase the stories of so many families. We also lose opportunities to explain why preventing prematurity really matters. Unless we start taking about the realities of prematurity, and stop only talking about babies with “normal lives,” nothing will change.
Make sure you wear your purple today to support all preemies - the survivors and those that are in our hearts, their parents, their caregivers, their families, and the professionals that love and care for our babies in ways we cannot.