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 would spend time in the NICU.
I spent time doing research, toured the NICU, and talked to other moms. While 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 their bed worrying. The environment is stressful and isolating.
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 went into survival mode as we continued to care for our three older kids, as well as 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. 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 that 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, and they were 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 that 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.
Previous to my experience in the NICU, when I thought about PTSD, I thought of veterans who had experienced war. While this is a serious problem that deserves attention, it should also be taught that PTSD comes 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 short 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 episodes that are life-threatening that parents must witness. There are conversations with doctors about the risk their child is in on a daily basis as well as observing 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 they are in the NICU which can be days, weeks, or months. Due to these conditions, the NICU could be likened to a warzone.
Parents with PTSD due to the NICU experience may struggle with depression, anger, anxiety, nightmares, avoidance of certain situations, panic when they hear an alarm going off, or even distance themselves from their child. While some parents may notice these symptoms right away, it is possible that it may take months to 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 on both the parent and child, so it is best to reach out as soon as possible.
Five years after their birth, I still have moments where I worry about germs, but I have to remind myself that they are bigger, stronger, and their bodies are more equipped to handle and fight off illness. My three, four, and five pound babies are now strong, average-sized kids. Thanks to the counseling I received when those moments happened, I am able to remind myself that the NICU is in our past, and the kids have a bright future.
By Sarah Lyons