PTSD helps parents keep their children alive- but at what cost?
by Hilary Savoie

“One of the big things that still gets me is that I had to do chest compressions on my own child” Meghan Shuttleworth’s voice is surprisingly steady as she says this to me.

She continues, “I have to do CPR training for work, which I just did a few weeks ago. And I had to leave the room at one point. Because all of that stuff just came flooding back. I can’t even explain what it’s like to have to do chest compressions on your 6-month-old baby.”

I am not unaware of the realities that parents like Meghan- parents who are raising medically fragile children with life-long health and developmental complexities – face daily.  Meghan is certainly not the first mom I have ever spoken to about having to give her own child chest compressions.  Still, after Meghan finishes her story, I struggle to mask the unsteadiness in my own voice as I tell her how very sorry I am.  Then I remark on how adaptable we are, how humans can learn to live with just about any reality, however terrifying.

And it is true. We are built to survive through the realities that face some of our children, like the steep odds that Fiona was born to: at 10 weeks premature, weighing 3 pounds, with five organs on the outside of her body, Fiona was given two weeks to live.  She started her life in the Neonatal Intensive Care Unit (NICU);  soon she will be 9 years old.  Meghan believes Fiona survived because, “We just fought, and she fought, every single day.”

We are built for survival, but sometimes the ways in which we survive- and ensure the survival of our fragile children – have steep costs.

There is very little investigation into PTSD within populations of primary caregivers of children who live with life-long medical and developmental complexities that have led to long-term repeated life-threatening experiences.