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June 25, 2024

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Parents After the NICU: The Unexpected After Effects

Even after Baby comes home, anxieties can crop up for you, bad dreams and jarring fears all related to your baby's wellness and the emotional trauma you've experienced.

I didn’t prepare for life after the NICU. But five years ago, when we found out we were having triplets, I was told it was considered high-risk and the babies would most likely be born early. That meant we’d be  spending time in the NICU. So I spent time doing research, toured the NICU, and talked to other moms. While this early preparation was valuable, nothing truly prepared me for the experience. Seeing your infants 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. 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 went into survival mode as we continued to care for our three older kids and newborns with low immunity. It was an exhausting and challenging time unlike anything else we have ever experienced.

A New Routine
Over time we found our new normal and got into a routine. But I had anxieties I had never experienced before. I was afraid to take the kids out, fearing we would catch a virus. 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.
    A hospital social worker talked 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 came I started to feel more stress. Anniversaries including hospital bed rest, NICU time and my daughter’s surgery to fix her heart defect. I was not in a good place mentally.
    My panic, worry and general stress went 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. With the encouragement of my doctor and my husband, I sought out a counselor who helped me work through my emotions over the last year. I was treated for post traumatic stress disorder (PTSD) and I began to feel like my old self again.

Huh? PTSD?
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, PTSD also comes after a variety of difficult 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 journey 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 sometimes hear alarms sounding indicating their child is in distress. You often witness NICU babies in life-threatening episodes. Parents 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 can be likened to a war zone.

Traumatized Parents
Parents with PTSD due to the NICU experience can struggle with depression, anger, anxiety and nightmares . They can also avoid situations, panic when they hear an alarm go 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. Even when you feel you’re out of “survival mode” it can happen.
    If you feel like you are experiencing PTSD, reach out to the NICU for parent resources. 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. Untreated PTSD can cause lingering effects on both the parent and child, so it is best to 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 if the kids’ colds will turn into respiratory distress. I 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 hard moments happened, I am able to remind myself that the NICU is in our past and the kids have a bright future.

Sarah Lyons is a mother of six and a frequent contributor to Nashville Parent’s family of publications.

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