When my mom died in 2022, her obituary, lovingly written by my brother Chuck, stated that she had six children. Everyone knew our family had five kids, so the number six was a surprise.
I didn’t learn much about my additional brother until later in life. My mom shared the story with me in tiny fragments over time, slipping the details and questions into conversations about my job in the NICU and NANT.
Over the years, she came to understand that her third child would’ve likely survived if born now. He came into the world at approximately 32 weeks gestational age, but in 1961, there was nowhere in the hospital to take a baby like him to support his breathing and other systems. He passed away while my dad helplessly stood watch and was buried before my mom came home from the hospital. She never saw him. His name was Paul.
I was still learning bits and pieces about that story, even in the last two weeks of her life. She was 84 years old then, and this son, this experience, still brought tears to her eyes.
Four of my twenty nieces and nephews were born preterm. Three of them survived. One of the four, my niece Taylor, lived for 29 years with multiple medical complexities, a warrior heart, and a life filled with love and community. (She always brought the love.) My great-nephew was also born early and during the pandemic. He’s now a thriving 3-year-old.
Prematurity has many faces. Part of prematurity awareness month is recognizing and honoring the short and long-term impact that prematurity has on a person, a mother, a family – whether that child ever made it to the NICU or not, whether they had the privilege of growing old or perhaps gained the wisdom of a lifetime inside of three decades.
The thing is, my family’s experiences with prematurity are not unique or uncommon. But we don’t know the stories people carry unless we ask or care enough to dig deeper, and not just during Prematurity Awareness Month. We can begin by asking our friends, relatives, and colleagues if and how prematurity has touched their lives.
One in ten babies in the U.S. is born preterm. Everyone knows a former preemie. How we support and champion them and their families throughout a lifetime is too big and important to leave solely to healthcare. It requires human care. It takes us all.
