PTSD and NICU Parents

April 15, 2019

When my son, Theo, was born at 27 weeks in 2014, I went from blissfully pregnant to survival mode in a matter of hours. For six-and-a-half months I sat by Theo’s incubator, and later crib, bonding with him as best I could while he was hooked up to monitors, ventilators and nasal cannulas, and a feeding tube.

Photo credit: Atiwat Studio

Instead of working at my day job or on my novel, I discussed developmental milestones with his therapists, learned how to replace a feeding tube on my own, and tried to get a few hours of sleep in between his nighttime meds and his early morning blood draws. I was perpetually attached to a hospital-grade breast pump. Aside from a few guilt-ridden moments when I blamed myself for his premature birth because I hadn’t registered what my HELLP (Hemolysis, Elevated Liver Enzymes, Low Platelet count) symptoms were until I thought I was having a heart attack, I didn’t think about the past. I wasn’t focused on the future. I was living day-to-day because Theo might not make it.

What I wasn’t aware of at the time, was that I was already in the throes of PTSD (Post-Traumatic Stress Disorder) and ASD (Acute Stress Disorder).

Like many, I attributed PTSD to soldiers coming back from war or victims of assault. In many ways, the NICU is like a warzone for parents as their premature baby fights to survive. It’s not one trauma, but a series of events that occur after an early or unplanned arrival. Watching their sick infant undergo constant tests and procedures takes a toll on parents.

According to a 2009 study by Richard Shaw, MD, almost 60 percent of parents whose infant was in the NICU developed PTSD. In the study they found that mothers were more symptomatic earlier, but fathers had higher rates of post-traumatic stress four months later when the child was home from the NICU. Parents may haunted by flashbacks to their time spent in the NICU when their child gets sick, goes to a hospital for a routine procedure, or even on their birthday.

When Theo contracted a superbug and pneumonia after his PDA ligation and one of his lungs collapsed, the social worker appointed to Theo suggested I take a look at Hand to Hold and read about PTSD in the NICU. She also suggested I see a therapist to talk about the trauma my family had just been through.

Of course, I ignored her advice. I wasn’t going to spend time away from Theo to go talk to someone. I didn’t need to. I was fine. I didn’t even look at the website. Instead, I started journaling every day and writing Theo letters about what challenges he was facing and how hard everyone was working to keep him alive. I swam laps in the hospital therapy pool.

When he arrived home after 205 days in the hospital, I focused on keeping him healthy. When I went back to work part-time, we hired a nanny who was a trained EMT, and then later another nanny with a medical background who was in nursing school. We kept Theo from public places as RSV season ended. We limited visitors. We focused on him learning how to eat without a feeding tube.

Theo and Lionel Scritchie in Budapest.

It wasn’t until the night before his first birthday that I had a panic attack. Suddenly, I was reliving the nightmare of his birth. All the emotions I’d buried the last year came flooding back, making it impossible to really enjoy his first taste of cake. There was also inexplicable grief at the realization that I’d never be pregnant again. Then, six weeks later Facebook kindly reminded that on this day a year ago, the doctors told us Theo wouldn’t survive the day and that we needed to mentally prepare for losing him. Overwhelming sadness and insomnia took over. I needed help.

I sought out a therapist who specialized in PTSD who helped me find ways to manage my anxiety and depression. My doctor found the right dose of medications to help with the anxiety attacks and insomnia. Theo’s birthdate and the anniversary of the worst day of my life are still triggers for me, but now I can cope better. I don’t log into Facebook in the fall to avoid those status reminders. I make a point to see friends and exercise. I write.

Theo and I talk candidly about his traumatic birth experience and how I got so sick it’s not safe for me to have any other babies. And when I’m struggling with my mental illness, I don’t try to put on a brave face for my family. I show Theo that it’s important to work through your emotions, and that it’s normal to have a good cry. He gets its. He’ll climb into my lap to give me a hug and a kiss or he’ll bring me his stuffie or toy to help me feel better. The PTSD triggers may never fade and I’m okay with that. I’ve got a healthy son and a stuffed lion standing in my corner.