NICU Advocacy Through Social Media

January 9, 2013

At Life After NICU (support group) 1st Birthday BashWhen I take a moment to step back and look at the the big picture, access to information these days can be equal parts blessing and curse. The idea of privacy is slowly becoming obsolete. While there are certainly ways to avoid details of your life being available for public access, we have become a “need to know” society.

When we became parents of a 3lb. 6oz. miracle baby boy, the idea of seeking support from other NICU families through social media wasn’t something I considered. We would frequently update Jayden’s progress on our own profiles, but we didn’t really know any other families who had preemie/NICU babies. To be blunt at the time I wasn’t concerned about seeking support as my primary concern was to make sure my wife was holding up as she was struggling, and my son was getting strong enough to bring home.

It wasn’t until after Jayden came home from the NICU that my fears and uncertainty began to manifest itself. It affected my work. I couldn’t sleep. I was constantly stressed out. The question that consistently ran through my mind was “Am I cut out for caring for this child?” It got to the point I needed to connect with others, to feel like I wasn’t alone. This past spring I wanted to write about my experiences in hopes that sharing my experience would help the navigation of the NICU with others. Seeing the success of other support groups and a lack of dads in most them, I created Papas of Preemies as a forum to connect with other dads and shed some light on the journey dads go through. In addition, my wife has taken a role with the online group Life After NICU (support group) as the community liaison and director of family support. Both endeavors have provided us with a great sense of purpose.  Without question the response has been wonderful, and all of it comes courtesy of social media.

As I said in the beginning, social media can be, at times, an invasion of privacy. However without the help of Facebook, Twitter, Blogger, and even Instagram, our support groups wouldn’t have the reach they do now. On that spectrum I am forever grateful for social media. Publicity, in this arena, is a good thing. It saddens me to ponder how much more difficult it was for parents to find solace in others who were navigating the NICU 20 years ago. Even 5-10 years ago for that matter. Being able to connect with others, far and wide, has made support all the worth while.