“Narratives from the NICU: Neonatal intensive care units through the eyes of parents,” a special report by Inspire.com, sparked a memory of freelancing for Piedmont Hospital in Atlanta, Ga. Baseball Hall of Famer, Don Sutton and his wife, Mary, opened their world for me to write about their Miracle Baby, Jackie, born 16 weeks early, weighing one pound. I knew nothing about baseball — or babies — then, but it was an exciting time and they were very kind. Telling the tale also included the opportunity to attend a Preemie Reunion at the hospital. It was a heart-warming, inspiring event, and I learned about a new side of health care as nurses and physicians marveled at “their babies” who had come back to visit, so big and strong.

While reading the Inspire piece, it struck me that the preemie reunion was essentially a form of social media. Although technically public relations, this type of story and event was grass roots social media. The Public Affairs office arranged the event — a literal “social” of families, friends, and hospital staff. They communicated the story among themselves and strategized. The “media” truly was media, including coverage by local television and print news, as well as my article for the hospital’s magazine. The end result of this form of social media was the same as the electronic form today: spreading news, sharing ideas, and generating support, in this case for the NICU.

While pondering this concept during the week, I was surprised when a friend emailed similar thoughts of “early social media.” She reminisced about her struggles nearly 40 years ago:

“How times have changed … Compared with [social media], the childhood cancer ‘network’ we found when Laurie was diagnosed back in 1973 was the equivalent of the proverbial green eyeshade and quill pen. Word got around quickly at church, and the next day – I don’t think we had even had our first trip to NIH – I got a call from a woman in Annandale. She said her son had the same kind of leukemia as Laurie and that she would find us at the NIH clinic, which she did. Intros were made, so Laurie (just turned 4) and I suddenly had a crowd. What’s more, there was a Washington parents’ group, parents of kids from all area hospitals (but with NO hospital backing) that met on a regular basis at the Rayburn House Office Building. It was called ‘Candlelighters.’

Nixon was president and they were trying to get the National Cancer Act passed so in between treatments, we knocked on Congressional doors (i.e., lobbied), went on radio, and shared info about treatments (and results) around the country by phone and snail mail that included a mimeographed newsletter. We stood out front of the White House with little candles lit. We felt like we were doing something but it had NOTHING of the power of today’s social networking.”

Her story is very powerful to me. Those struggling families had to reach out physically and act, facing all the complications and challenges that entails. I hope social media does justice to the efforts of those who’ve gone before. Because when technology is taken out of the equation, it is the people who make the difference — always.

“Narratives from the NICU: Neonatal intensive care units through the eyes of parents” is on Inspire.com at www.inspire.com/static/inspire/reports/inspire-preemie-nicu-narratives.pdf

Candlelighters can be found online at www.candle.org

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