As a Parent Support Volunteer, one of the things that I try very hard to do is let other NICU families know about PTSD. While in the NICU, we are all waiting very impatiently for the day we can take our babies home, but unfortunately, that doesn’t mean our journey is over. After all the business of the NICU is over and you are finally at home with your baby… and there are no more current huge medical crisis going on… you come to a place where you start to process the whole traumatic birth experience and the traumatic NICU stay. This is one of the best articles I have come across spreaking of PTSD and the NICU. It is worth taking the time to read.
Living in the Shaky Place
In this essay, which first appeared on Jessica Valenti’s personal blog, the editor and writer discusses the post-traumatic response she had to her daughter’s premature birth last year.
“Compassionate action starts with seeing yourself when you start to make yourself right and when you start to make yourself wrong. At that point you could just contemplate the fact that there is a larger alternative to either of those, a more tender, shaky kind of place where you could live. This place, if you can touch it, will help you train yourself throughout your life to open further to whatever you feel, to open further rather than shut down more.” —Pema Chödrön
It started several weeks after my daughter’s birth with an itch on my c-section scar. It was an entirely normal twinge, something that happens when nerve endings are healing. But instead of noticing the itch, maybe scratching it and moving on, my knees gave out and I hit the ground.
Suddenly I was on the operating table again — multiple sets of hands in me, shifting and tugging at unknown organs. I’m not sure how long I stayed on my living room floor, but when I became aware that I wasn’t in the hospital, my hands were shaking and I was covered in sweat.
It was the first of many flashbacks I would have over the next year or so — a post-traumatic response to my daughter’s premature birth, NICU stay, and the illness I developed during pregnancy that I thought would kill me. (It’s common for parents of babies in the NICU to develop PTSD, as it is for women who have traumatic birth experiences.)
The more amorphous the symptom, the more frightening I found it. The worst, though, was the detachment I felt toward the people closest to me.
The funny thing about PTSD is that it’s sneaky. The eight weeks that Layla was in the hospital — while the emergency was still in full force — I was fine. Productive, even. I wrote articles, maintained a blog for family and friends about Layla’s progress, and went to the NICU every day to be with her. Sure, I had daily crying spells and suffered from an understandable amount of sadness and fear that comes with having a child in the hospital — but I was functioning. It was only after the crisis was over and Layla was home that everything changed. Just when I thought the nightmare of the hospital was over, a new one took residence in my home and in my head.
What happened most often was that out of nowhere I’d think that my daughter was dead. I’d be out on a walk or in another room while Layla was sleeping and I would just know that she was gone. Or that someone had killed my family while I was out. Not a fleeting “oh my God, what if” feeling; I believed these things with absolute certainty. You could not have ever convinced me that anything else was true. It was only once I saw Layla and my family that I understood they were all right.
I stopped sleeping. Sometimes thanks to nightmares, sometimes just because the rotation of horrible thoughts made it impossible to shut my eyes for more than a few minutes at a time. When most people have a bad thought they can push it out of their mind; when you have PTSD, you can lose that ability. Imagine the worst, most violent thoughts you’ve ever had about life, your family, yourself — the ones that are so awful that they pass through your mind for less than a second before you hurriedly force them out. Now imagine these thoughts are absolutely immovable; you literally cannot stop thinking them.
I started having small blackouts. The first one happened while driving home from a lunch meeting. I suddenly found myself miles past my house, an hour later, still driving. Socializing was impossible. I was afraid to do anything, terrified of having a panic attack or flashback while I was out. I used to be quite the social butterfly (OK, party girl), but now people made me anxious. I felt as if I was faking it with everyone I interacted with. It’s easy to make small talk when things are generally OK — even if you’re having a bad day you can mostly smile through it. But when you’re not sure if your sense of reality is going to change at any moment, it’s hard to pretend.
The smaller things — like memory lapses and getting easily confused — were worse than the obvious post-traumatic symptoms. I forgot conversations that I had minutes earlier, or would ask the same question several times in a short period. These minor mental shifts were more difficult because they weren’t easily attributable to trauma: I knew logically that the flashbacks would stop, but I was afraid the confusion never would.
The more amorphous the symptom, the more frightening I found it. The worst, though, was the detachment I felt toward the people closest to me. When I wasn’t having a symptom of some sort, I felt numb — it wasn’t just that I had a hard time feeling love and happiness, I also couldn’t feel anger or sadness. I was just there.
I found myself wishing that I were still covered in bruises the way I was when I first left the hospital (from the multiple injections, IVs, etc. that had to be put in pretty roughly because of my edema). When I looked hurt, at least, it was obvious that I was hurt. But without physical signs of a trauma I just looked like me, even though I felt more damaged than ever.
There’s no real cure for PTSD, though there are various kinds of treatment. The only one that worked for me was time.
It’s been about a year and a half since Layla’s birth; my PTSD, while still there, has gotten manageable. I have nightmares and don’t sleep through the night very often, but the flashbacks and panic attacks have mostly stopped. I also get the occasional intrusive awful thought, but unlike before when I fully believed the horror was real, now I have a parallel line of thinking that reminds me of the truth.
My relationships remain strained — I’ve neglected friendships, those close to me have struggled with how best to help, and some simply can’t understand why I can’t get over it already. But I’ve also met people with similar problems, people who understand and have made the numbing solitude of not trusting your own mind a little less lonely. I’m grateful for that.
I know now that the core of my trauma was the realization that life is out of my control. Life is unpredictable, scary, and sometimes tragic. Believing anything else is a false comfort. But I actually find solace in letting go. It lets me see the world more clearly, value my relationships more deeply and love the people around me more fully. In a way, experiencing my mind responding to trauma — though scary and core shaking — was freeing.
When I was a kid, maybe nine or 10 years old, my father pulled me aside during a family vacation to talk about swimming safety before I got in the ocean. He told me not to ever fight a strong current. You get too tired swimming against it and that’s how people drown — better to swim with the current toward shore, he said, no matter how far down the beach you end up from where you started.
I’m still swimming — but I’m not drowning. And though I know once I hit shore I’ll be pretty far away from where I’m started, I feel OK about that. I’m not the same person I was before and I don’t think, if given a choice, I would want to be.