Whether it was his intent or not, Benjamin Scot did an amazing thing for prematurity awareness month when he began capturing footage of his premature infant son just days after his birth.
You may have seen Benjamin’s video – “Ward Miles – First Year” – which he created as a birthday gift to his wife. Stories about it have appeared on CNN, the Today Show and many other national news outlets. It’s also spread like wild fire via social media.
I saw something about it on Facebook earlier this week, but didn’t watch it. Then, links showed up in my email. People in my life wanted me to see how wonderful the video was. How beautiful and heartbreaking and inspiring this baby’s first year of life was.
I wasn’t sure I wanted to see it. Without seeing the footage, I knew what was in that video and I wasn’t sure I was ready to relive the memories.
Both of my daughters were born too soon – my older daughter at 29 weeks and her little sister at 34 weeks gestation. I knew what was in that video because I’ve lived it. That NICU experience six years ago changed me and knowing what Benjamin’s video was likely to do to my emotions, I opted out.
But then it occurred to me that this video and the inside look at this family’s first year with a preemie, could possibly be the first exposure someone has to what life is like with a premature baby and what obstacles these strong, resilient, determined, tiny people overcome. More understanding of what prematurity looks like is a good thing.
So I watched it.
And as expected, I cried and I remembered. I remembered the helplessness and the struggles, but I also remembered the triumphs, the firsts and the lessons I learned during that season of my life.
The first scene of the video, when Ward’s mom is able to hold him for the first time, reminded me how amazing and heartbreaking that same milestone was for us. When I was pregnant, I couldn’t wait to meet my daughter, to hug and kiss her and snuggle her as she fell asleep. And all of the sudden, she was in the NICU in an isolette and we were told that touch isn’t comforting for a preemie. The thought of holding her was scary to me and nothing like what I’d dreamed about.
When I was finally able to hold her close for kangaroo care (skin to skin contact), it was the most calming experience I’ve ever had. It certainly lacked the privacy and simplicity that I’d dreamed of, but I can’t imagine anything will ever feel better than that moment did.
When Benjamin’s son pulls off the CPAP mask that is over his nose, I laughed because it reminded me of our daughter pulling her feeding tube out and waving it at the nurses, almost to say, “please take this, I don’t need it anymore”. The first time I saw her little face without anything taped to it was another milestone I will always remember. I could finally see what she really looked like.
Watching this video brings back the raw emotion I was feeling at the time – the terrifying realization that there was nothing that could be done to stop my labor with my first pregnancy and then frustration with my body that despite every medical intervention possible I wouldn’t carry my second pregnancy to full term.
Watching this video and talking to other parents over the years has made me realize that there’s kind of a preemie club. It’s a club that nobody ever wants to be in, but we’re bound by our similar experiences. There’s something very unifying about giving and receiving support from someone who has gone through the same sequence of events and emotions we have. It’s so powerful that I feel connected to complete strangers.
While I will never forget those 33 days my oldest spent in the NICU, we have moved forward with our lives and we are fortunate that both of our girls are completely healthy now. It’s the stories and videos I see from other families that make me think back and relive the memories. But the question that continues to haunt me is “why?” There are so many unanswered questions about prematurity.
And for those questions to be answered, we need more research. We need more families to participate in that research. And we need more money to put behind understanding why this happens.
Our family has great confidence in the efforts of the March of Dimes and we choose to give both our time and money to support their efforts. We’ve also recently participated in Dr. Louis Muglia’s study at Cincinnati Children’s that is seeking to understand the role genetics plays in the occurrence of preterm births. I believe he is headed in the right direction and I am excited to be part of what he might uncover.
It’s all about moving forward and seeking new information to allow us to understand how to best prevent preterm births.
In the meantime, I will continue to appreciate the Benjamin Scot’s of the world who are using their talents to help spread awareness and understanding of prematurity.