Parents with PTSD

The Unexpected Aftereffect of the NICU

by

I never thought I would experience having a child in the NICU. But five years ago when we found out we were having triplets, I was told that my pregnancy was considered high risk and the babies would most likely be born early and spend time in the NICU. I spent time doing research, toured the NICU and talked to other moms. Although this early preparation was valuable, nothing could truly prepare me for the experience. Seeing your child hooked up to wires, monitors and oxygen is heartbreaking. There are often alarms going off as your child struggles to breathe and you spend time sitting next to her bed worrying. The environment is stressful and isolating. You are surrounded by babies who are literally fighting for their lives.

Our triplets spent 14, 16 and 44 days in the NICU. One needed open heart surgery and came home on a feeding tube and oxygen. Once they were home, we shifted into survival mode as we continued to care for our three older kids, as well as the three newborns with low immunity. It was an exhausting and challenging time unlike anything else we have ever experienced.

Over time we found our new normal and got into a routine. But I noticed new anxieties that I had never experienced before. I was afraid to take the kids out, fearing we would catch a virus that would compromise their health. Logistically, it was hard to take three infants anywhere, especially one who needed a feeding pump and portable oxygen tank. I started to have panic attacks, bad dreams, and found myself worrying more than ever.

That winter our daughter was hospitalized for five viruses and was admitted to the ICU once again. When they prepared to transport her, my heart started beating very rapidly, I began to sweat, and I felt like I couldn’t breathe. I shared my feelings with the hospital social worker who was able to support me and talk me through my panic attack. My daughter recovered and was sent home where she grew and thrived over the next few months. As the anniversaries of painful memories, including the difficult, high-risk pregnancy, hospital bed rest, missed moments with my other children, NICU time and my daughter's surgery to fix her heart defect, came upon us, I started to feel more and more stressed. Recalling the difficult conversations I had with doctors about the true risk my children were in at birth and during the NICU time, I realized I was not in a good place mentally.

I found myself panicking, worrying and feeling general stress elevated considerably beyond my normal levels. I had a tightness in my chest and I frequently snapped at my husband and kids. I knew it was time to ask for help. I didn’t feel like myself. With the encouragement of my doctor and my husband, I sought out a counselor who helped me work through my emotions about the experiences I had walked through over the last year. My counselor treated me for post-traumatic stress disorder (PTSD), and I began to feel like my old self again.

            Before my experience in the NICU, when I thought about PTSD I thought of veterans who had experienced war. This is a serious problem that deserves attention, but people also need to know that PTSD can come after a variety of life experiences.  Parents who experience their child in the NICU and those who have severely ill children often experience PTSD. According to a recent New York Times article, “Duke University interviewed parents six months after their baby’s due date and scored them on three post-traumatic stress symptoms: avoidance, hyperarousal, and flashbacks or nightmares. Of the 30 parents, 29 had two or three symptoms and 16 had all three.”

Parents who walk through the NICU experience have several traumas in quick succession. First, they have an early, often unexpected, birth. Then they see their newborn child endure risky medical procedures, and there are alarms sounding indicating their child is in distress. Often NICU babies have repeated life-threatening episodes that parents must witness. The converse daily with doctors about the risk their child is in, as well as observe the fragile state of the babies around them in tightly spaced rooms. Parents will face these traumas almost every time they see their child during the time Baby is in the NICU, which can be days, weeks or months. Thanks to these conditions, the NICU can be likened to a war zone.

Parents with PTSD from the NICU experience may struggle with depression, anger, anxiety, nightmares, avoidance of certain situations, panic when they hear an alarm going off. They may even distance themselves from their child. Some parents may notice these symptoms right away, but it is possible months may pass before symptoms show up, sometimes when the family feels like things have returned to normal and they are out of survival mode.

If you feel like you are experiencing PTSD, reach out to the NICU for resources for parents. Most hospitals have social workers prepared to work with parents and refer them to support groups and counseling services. The March of Dimes is also a great resource for parental support for NICU families. Untreated PTSD can cause lingering effects to both the parent and child, so reach out as soon as possible.

Now, five years after the birth of my triplets, I still have moments where I worry about germs or wonder whether the kids’ colds will turn into respiratory distress, but I have to remind myself that they are bigger, stronger, and their bodies are more equipped to handle and fight off illness. My 3-, 4- and 5-pound babies are now strong, average-sized kids. Thanks to the counseling I received, when those moments happen now, I am able to remind myself that the NICU is in our past, and the kids have a bright future.

Sarah Lyons is a mom of six, including 5-year-old triplets. At five, they have caught up to their peers and are healthy and growing. Sarah is sharing her story hoping it will help other NICU parents. 

As always, please consult your health care provider with any questions or concerns.

NYTimes.com/2009/08/25/health/25trau.html

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