Dawn Ireland, Public Speaker: The Wrong Kind of Awareness

4 years ago today, a television crew landed in my office to interview me for a segment of a crime television show.

They set up their cameras in the long hallway of the charity's office and took hours to set up, put me together, film and then pack everything up - for a 3 minute spot.

It seemed like an insane expense on their behalf but they said talking to me was integral to the storyline.

They weren't there to learn about Congenital Diaphragmatic Hernia.

They weren't there to solely share the story of one of our patients.

They were there to report on the stolen identity of one of our babies who had passed away.

I was in the story because I was the one who had to tell this little girl's mother that her child's photos, story and their grief had been stolen and used for profit and attention.

This is was not at all how we wanted to raise CDH Awareness on national news.

This is not at all what I ever thought would be a job duty as president of a nonprofit.

That phone call was one of the hardest that I've ever had to make. I knew this family, prayed for this baby, grieved for this baby as I watched her parents grieve publicly and it broke my heart to have to have that conversation.

The conversation never would've happened if a few members of our Board didn't have eagle eyes and notice that something wasn't right about the new "grieving mom" who joined our charity. When they looked at photos this woman posted on Facebook, one of them recognized baby Eden's beautiful face.

Then the questions started, the research, the investigation and when we determined that yes, this baby's ID had been stolen... the parents and the police were alerted.

Then there was a camera crew in our office.

Eden's mom is a powerhouse. She's worked relentlessly to raise awareness of CDH and infant death and to keep her daughter's memory alive. When the police told her they couldn't do anything because of the laws in her state... she said that was not good enough and called the media until True Crime Daily took her story.

While this is the wrong kind of awareness that we wanted for CDH.... it was the right thing to do to try to stop identity theft and to raise awareness so that other grieving parents can possibly protect their child's identity.

Sadly, this wasn't even the first time that our charity has had to deal with this issue.

So we make the tough phone calls.

We stay alert.

We have to do more than just raise awareness, research, support families. We have to love on these families, protect them and defend them when needed too.

Charity work is hard, emotional work. Blog posts, videos and cameras are just lights and sparkle.... the work itself is hard, dirty, upsetting, draining.

We could've kept quiet... kept our distance from the situation... declined the interview..... but you cannot lead if you cannot be brave and set examples for others to do the right thing and speak up. I'm proud to work with Board that are courageous and have strong integrity.

If Eden's parents could be strong during this ordeal... we owed it to them to be strong too. So we were.

This was not the way we wanted to get a TV crew in our office.