Unhealed Scars: The Unexpected Trauma Following NICU Discharge—And How I Overcame It
So, there we were, about to leave the NICU for the very last time. With one hand, my husband pushed our double stroller, two twins nestled inside. This was the first time my twin boys, Lochlan and Lex, had ever been out of their hospital room together. My husband’s other arm pulled oxygen tanks that were connected to each boy's nasal cannula. My 2-year-old daughter walked by my side while my parents and in-laws trailed behind.
When we rounded the corner, I prepared to see that long empty hall that I had looked at every day for the past 101 days. I was trying to hold back emotions while attempting to process this surreal moment. After all, when you have twins born at 24 weeks, you learn to forgo all expectations. This made some new-baby milestones difficult to process—and taking our babies home was no exception.
That’s why what happened next was so emotional for me. I was used to an empty quiet hall when rounding our corner, but this time, when I looked to find those huge exit doors at the very end of the long hall, I saw the people lining both sides. It looked less like a hospital exit and more like the finish line of a marathon, crowd and all. Suddenly, the air in my lungs disappeared and I found myself trying to take in a breath. I fell to my knees. All of the emotions I had been holding in for three months broke in that instant and once I was able to take in breath, I exhaled sobs. It was at this moment I knew that we were actually leaving the NICU. The staff was there to celebrate us and to say their final goodbye.
I did my best to pull it together so I could make it to the end of the hall by forcing one foot in front of the other. As we approached the medical team, I made a point to look each nurse, therapist, and staff member in the eye despite how difficult it was to do so. I had so much to say to those angels and I think I did with my eyes although the only words that left my mouth were, “Thank you. Thank you. Thank you.”
When we exited through those big doors and they shut behind me for the last time, it felt like a chapter had closed. I remember thinking that this was the end of the really hard stuff. We had survived what felt like the unsurvivable and we had won the race. But what I didn’t know at the time was that there was an entirely new and very difficult journey just beginning.
Going home! Oct 27, 2017
Same fish tank at the hospital on their 6th birthday!
We left that day with medically complex twins on oxygen. On top of pumping breast milk around the clock, we were on our own feeding, changing and caring for infants, and we had countless follow-up appointments. My boys had chronic lung disease and the fear of another admittance was crippling. As Lochlan and Lex’s first birthday approached, the twins were stronger and the world felt a little safer so we decided to plan a huge party. Their first birthday would be the first time many friends and family met our twins. We had previously turned down most visits due to their medical vulnerability. As I planned this monumental event, I remember a new feeling overtaking my body. My heart would race, I couldn’t sleep, and the insomnia resulted in exhaustion. The more tired my mind and body felt, the more irritable and short-fused I became. This vicious cycle only gained momentum. I was in a mental health tailspin and I didn’t know it at the time, but this was my first wave of anxiety. I dismissed these feelings as excitement and stress over their party, but what was really happening was that my body was screaming and hurting over the trauma she endured that had started one year ago.
As the months went on, the twins got stronger. Lex graduated from all early intervention. Lochlan continued to have lots of therapy and follow-ups due to his diagnosis of Cerebral Palsy and Hydrocephalus, but we better understood what his future would be like and we managed it well. The biggest celebration, however, was both being discharged from pulmonology. The fact that we didn’t have to live in fear of respiratory viruses meant we could take on more risk. This unknowingly gave me, my mind and my body relief. For the first time since their birth, I felt a sense of security, but with security came something I did not expect: unprocessed trauma, and it hit hard.
The anxiety began to get stronger and more and more life altering. I had been living in survival mode for years. It was explained to me that your body protects itself by only giving you what you can handle at any given time. This had masked the birth and medical trauma I had experienced while in the NICU simply because I did not have the capacity to process it. Since my resources were no longer firing to protect my twin’s extreme vulnerability, my body decided it was time to unpack my trauma and it all came crashing down on me in a debilitating form of anxiety.
We had the honor of interviewing Savannah on the NICU Alumni podcast. You can listen to our conversation here:
This was a confusing feeling to me, as I tried to figure out what I was experiencing. Instead of knowing what was happening and why, I fought hard against my anxiety. This only made things worse. Every day, I looked at my beautiful thriving toddlers. They were a constant reminder of how close we came to losing their lives. Gratitude was the only thing I should feel, I told myself, so why would I have such pain surrounding their births? No one had ever explained to me that trauma can reveal itself years after the experience has happened, once no one is really checking up on a mother’s mental health anymore, even 2 or 3 years after birth, (NICU stay or not).
My anxiety began controlling my life and so I began a journey to find healing and help. I started making medical appointments but left each one feeling medically gaslit. Under most circumstances, I probably would have given up my search for answers, but I was desperate, so I kept seeking help from other providers. Eventually and by pure fate, I found myself in a nurse practitioner’s office. As I explained my experience, I got to tell her about my twins’ birth and how my emergency cesarean surgery resulted in a second emergency surgery because my bladder had been nicked. I was able to share with her that my boys weighed 1 lb 10 oz at birth and they were over a week old before I got to touch them. She heard me when I talked about their brain bleeds, heart surgery, brain surgery and every life altering prognosis and diagnosis we had been given. She let me just talk and, unlike all of the other medical professionals I had seen, she not only listened, she truly heard me.
She then gave me a gift I did not think I was deserving of when she said, “Do you realize that what you experienced is what parents of oncology patients go through?” For the first time, it clicked. I understood the trauma that parents of medically complex kids battled, but never saw myself as worthy of the same compassion I was able to give them. She made me see myself as worthy of grief despite the fact that my babies had survived. She validated my experience, and the trauma that came with it. She helped me to realize that my unresolved pain was not, in fact, being ungrateful, but instead that it simply was. This helped me understand that grief can exist where there is life, and once I was able to understand that, I finally began to heal.
“grief can exist where there is life ✨ ”
In sharing our NICU story on social media, I have found many mothers have had a similar experience in dismissing their birth trauma or thinking their feelings are not justified. I have found there is a huge void in our medical system for taking care of a mother's postpartum mental health. Delivery doctors typically follow-up with mothers’ health 6-12 weeks after birth. After that, pediatricians are responsible for screening mothers for postpartum depression, but this is not enough. Few mothers who go to a well-visit are going to talk about their struggles with a pediatrician or, if they are like me, they may not even know that there is unresolved trauma until they are out of the window for standard medical screenings. Because there is such a void, I have made it my purpose to change this.
Prior to the twins’ unexpected birth, I was a published artist and muralist. At the time they were born, I was gaining momentum creatively, but my entire world, including my art career, stopped the day they were born. Even though all of my resources were going towards helping my twins, I always wanted to find my way to give back to families who had been through something similar. In 2022, I had an idea on how I could marry my passion (art) with purpose (helping others) by starting something called Cards of Hope. During the month of her birth trauma, I send a piece of artwork and a simple note to any mother of birth trauma who requests one. Sales from my other paintings help fund this campaign. My goal is to help fill this void in maternal mental health by simply raising awareness to it and by validating the confusing and contradicting feelings that mothers may experience around the anniversary of a birth. My hope is to help mothers of traumatic birth feel less alone in this journey because I don’t want anyone to feel as alone as I once did.
Different anniversaries can bring about many emotions, but one that has only brought me great happiness is that day we were discharged from the NICU. We walked out of those big NICU doors for the very last time on October 27th, 2017 and I am so honored to share my story with you on this very, very special day.
Looking for more mental health tips? Check out these links:
Postpartum Support International’s Warm Line - 1-800-944-4773 (4PPD); they will listen, answer questions, offer encouragement and connect you with local resources as needed.
If you or someone you know needs immediate assistance with mental health or substance abuse issues, call 1-800-662-HELP (4357) to be connected to a free, confidential, 24/7, 365-day-a-year treatment referral and information service, available in English and Spanish.
