Could your worry about your preemie be NICU PTSD?
After battling high blood pressure most of her pregnancy, Ashley Hinton of Vernon, New Jersey heard her doctor say the words pregnant women dread: “We can’t help you here any longer.”
With her daughter in distress, Ashley was rushed to a hospital an hour away and diagnosed with preeclampsia. Bristol was born 13 weeks early at 27 weeks gestation and spent 90 days in the NICU. You can read her full preemie mom story here.
Balancing NICU life with a three-year-old son at home took a toll on Ashley. “I lived in a constant state of anxiety, fear, worry and it was exhausting,” she said.
Ultimately, she was diagnosed with NICU post-traumatic stress disorder and worked with a therapist who gave her tools to cope and helped her understand that it was okay to let her guard down and not pretend that what happened didn’t hurt.
Diagnosis of NICU-induced PTSD and depression is on the rise with some studies of preemie parents reporting postpartum depression rates as high as 40 percent, well above the 10 to 15 percent reported for women generally after childbirth.
Ashley bravely shared her experience with Preemie Mom Camp and her encouraging words to other preemie moms experiencing post-NICU stress and anxiety.
Being a parent is cause for worry enough. You’re given this baby to look after and love but it doesn’t come with a manual for the first cold or teething troubles or hurt feelings. When you have a preemie, that worry and fear intensifies.
My daughter was born at 27 weeks gestation due to my preeclampsia diagnosis. Our NICU experience caused a roller coaster of emotions but they didn’t stop after her 90 day NICU stay. Three months after my daughter’s discharge, I was still experiencing a rainbow of emotions that come with loving a preemie and taking that journey alongside of them.
I spent many nights for many weeks up in the middle of the night after my family was tucked into bed, sitting in the dark by myself and being traumatized. I hated closing my eyes because I spent so many nights replaying my daughter’s NICU journey over in my head.
I spent the days busying myself with nonsense to keep my thoughts at bay. I refused to look at the photos I had taken while in the hospital because they sent me into an emotional tornado. I hid in a locked bathroom, sobbing into towels because someone had messaged me asking for advice on what to tell their brother who had a baby in the NICU. I lived in a constant state of anxiety, fear, worry and it was exhausting.
I remember the day I finally decided I needed help. I had come across a post on Facebook announcing the arrival of triplets that were recently born to an acquaintance of mine. Born early, as expected, in the same hospital my daughter was born at. I skimmed over the post, staring at the photos of her babies while tears built up in my eyes. I offered my congratulations to her in a comment and then lost it in the comfort of my home. I realized I was triggered by the mere photos of the same rooms, the same equipment that not only housed my baby but helped her live.
Her happy photos affected me greatly. I had a lump in my throat, my heart was racing, and I swear I could smell the hand sanitizer the hospital used still on my hands three months later as I hysterically cried into them. This wasn’t the response I wanted to have any longer. So I reached out to local therapists until I found one that was a fit.
It didn’t take more than one session with her before she mouthed the words, “PTSD” to me. She helped me understand that it was okay not to be okay. It was okay to let my guard down and not pretend that what happened to my family didn’t hurt. She helped me start to see things in a better light than what I had been doing and gave me the tools to cope. I spent those first months of my child’s life surviving it all right alongside her, but I needed help sorting through the mess of emotions in order to start living my life again.
My stress was often compounded by the fact that my first pregnancy had been so different. When my son was born full-term, I cannot remember thinking “well what if he doesn’t make it.” The fact is, I didn’t have to think about that. I was worried more about his feeding schedule and naps and if I was doing this whole motherhood thing right.
As a preemie parent, you still have all the normal things to worry about and you have all these other things piled right on top of it, staggered curiously awaiting a single ripple that will allow it to topple and flood your mind and heart.
Preemies face so many obstacles from the beginning: respiratory issues, brain bleeds, developmental delays, learning disabilities, infections, etc. I remember meeting with the lead neonatologist a day before I gave birth to go over our game plan and what to expect should I deliver early. I remember so vividly the moment he told me the statistics of survival for my baby should I make it to 28 weeks. 70-80% survival rate. To this day, that blows my mind.
Even a year later, that worry is still there for this strong little girl. I worry about her meeting milestones and gaining weight, whether she’s on the normal growth chart or if this cold will be the one that makes her pulmonologist insist on daily inhaled steroids to assist her lungs.
What I really would like to convey to the moms or dads out there whether they have a baby still in the NICU or just brought their baby home, is that it’s okay to ask for help. Talking about our experiences is a good thing, being open and honest about the circumstances surrounding our children’s start to life helps to maintain an open dialogue so that others don’t have to suffer in silence. Prematurity may not be roses, rainbows and unicorns, but there is a side of it that is tremendously beautiful and awakening.
It’s been said time and time again, we were given a chance to witness miracles happen and it’s so true. Even after the biggest storm, there is a beauty to be found in its wake. Sometimes you just have to work on it to see it. And that’s okay too.