When your new baby is delivered, you anticipate it being the best day of your life. For me, that event on a cold, snowy January night was one of the worst days of my life.
My son Wyatt was born after I went into early labor, and early — for no particular reason. I wasn't ready. It was so early — not four days or four weeks, but four months. There were people I hadn’t even told I was pregnant. To say I was scared is an understatement.
Recently a friend of mine had her baby delivered six weeks early and was terrified of what she was going through. I told her my story and she found such comfort in hearing the emotional similarities. Though everyone’s singular situation is different, I believe we all take solace in knowing the commonality of the emotional pain, trauma, and uncertainty that we’ve endured.
I was filled with emotions finding that my son was about to be delivered four months early. I’d never heard of such a thing. I couldn’t imagine a newborn baby could survive outside the womb four months before he was scheduled to be born, but I soon learned today’s neonatal medicine is amazing. An army of specially skilled doctors, nurses, surgeons, and even a chaplain saved my son’s life.
I will always remember that taxi ride to the hospital by myself in the middle of the night. My worried husband had to remain at home with our 18-month-old son. The hospital was eerily quiet as I waited nervously for the diagnosis. While waiting, I pleaded for something to help the pain I was feeling. Soon I was swarmed with 20 people in my hospital room. I was told I would get a dose of magnesium and a steroid shot to help the baby’s brain and lungs develop. Overwhelmed, I didn’t know what was happening.
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My husband arrived, terrified something was wrong with so much commotion. I noticed a portable warming unit being brought into the room. At the same time, doctors came in to tell us about medical problems that could occur if the baby was born right now. I was 24 weeks and two days along. A friend recently lost a baby at 20 weeks. I couldn’t help but think of her as I lay in this hospital room wondering if this baby would stay inside me for four more months. One wrong move and I thought the baby would come out. It was my second pregnancy, and this pain felt familiar. I knew something was seriously wrong — from the tone of the room, to the pain I was feeling.
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I faintly recall a conversation with one of many doctors about the survival rates and complications likely with a baby being born this early. Later, my husband told me they asked us to make a choice if we wanted to keep our baby. At the time, I was too overwhelmed to know what was happening. Inevitably there are tough decisions to make, but I knew one thing for certain: I would fight with every ounce of energy for this baby. I would do whatever I could for this fragile little baby inside me.
For 44 hours I lay in a hospital bed praying for my son. I negotiated with God. Don’t we all do that in dire circumstances? “God, if you do this for me, I PROMISE I won’t let you down.” I just wanted this baby to be OK.
After feeling a shift and water gushing, the bossy nurse who irritated me came in to wheel me into an operating room. I quickly realized the person you want by your side during a medical crisis is a confident, bossy nurse telling you what to do for your child to survive.
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That night my son Wyatt was born weighing 900 grams. NICU babies are weighed in grams, not pounds, but it was equal to 1 pound, 15 ounces. I had no idea what this meant. Would he survive? Could he even breathe? Could I see him? Hold him?
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I stayed in the hospital two long days. I didn’t want to be there. I wanted to go home after I gave birth. I’m embarrassed to say now, but I wanted to pretend this didn’t happen. I thought if I could get home, I could just start all over again. I’d wake up from this bad dream. I was in such pain I didn’t know how to cope. I wasn’t even able to see Wyatt after he was born. They immediately whisked him away and put him on life support. His tiny, fragile body was poked and prodded with tubes. I had so many questions about what would happen next.
I waited 16 hours before I could muster enough strength to go see my son. I spent hours, days crying. I thought I’d run out of tears, but I didn’t.
After Wyatt’s birth, we spent 117 days living in the hospital fighting for life. I say WE because I was with my son every step of the way. And today — as he’s on the verge of turning 3 years old — I realize I’ve made it through likely the most traumatic few years of my life.
Even today when I talk about my soon-to-be 3-year-old son, many times I cry. It's real trauma that I didn't recognize as post-traumatic stress. I discovered this recently working as a producer on a TODAY show story about NICU Journey Beads. I interviewed Jodi Dolezel, a NICU nurse in North Carolina, who started a program to help preemie parents visually mark and celebrate the progress their child is taking in the NICU. Every time a NICU baby makes an important step, whether it is being held for the first time or hitting a development milestone, parents are given a bead to show their progress.
Dolezel has cared for preemies for more than 20 years and knows the battle every preemie and preemie parent fights. She’s well aware of the roller coaster for every NICU baby and family, and their fight for life.
The Journey Bead program was created for parents to receive the support they need while their baby is in the NCU. Statistics show almost 60 percent of parents with babies in the NICU are at risk for post-traumatic stress. The more support you receive as a parent, the better the odds that you’ll come out emotionally healthier, Dolezel says.
Click here to learn more about the Journey Beads program
While interviewing Dolezel, I thought about Wyatt. I vividly remembered how scared I was to see my son as I didn't know what to expect. I remembered that I stopped at the door, bracing myself for what I was about to see. It wasn't pretty, and not the typical picture of a new little baby, but Wyatt was indeed alive. Unfortunately, nobody in the NICU could tell me what would happen to him, which is common when your child is born at 24 weeks.
Dolezel says it’s important that NICU parents recognize the firsts for their child. Holding your child is a big step. It was nice to hear that validation, as I placed a lot of weight on that one day — it took me 22 days to hold my son. For three weeks our only contact with Wyatt was through a plastic box. When it came time to hold Wyatt, I was so scared.
I thought I would drop him. I thought I would break him. I had never heard Wyatt cry — what if he cried when I held him? I was so scared of my own son. Is that possible? What if one of the many lines or tubes connected to his body disconnected? Would he know me? It took two nurses to prepare and take Wyatt out of the isolette. I sat in the chair, scared to move, and the nurses placed my son inside my shirt. This technique is called “kangaroo care.” It’s something I would do as much as possible during Wyatt’s stay in the NICU. But the first time, the day I dreamed of, was so daunting. I cried the entire time and wondered if I would ever stop crying. I had never felt such emotional pain. I constantly wondered if Wyatt’s was physical or emotional pain or both. Did he even feel anything at his premature age?
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My own mom came to stay with us during this traumatic time to help our family survive. She kept our family together. She kept my son Henry’s life as normal as it could be. My husband and I cherish our older son Henry. He gave us something to look forward to. At home, we kept it emotionally together for Henry. He knew something was wrong: why were Mommy and Daddy always sad and why did they cry a lot? We didn’t want Henry to think it was his fault we were sad. We told Henry about Wyatt, but an almost 2-year-old can’t comprehend that his brother was born on the brink of survival and was battling every day to meet him. Our life was a turbulent roller coaster for four more months.
This crisis took a toll on relationships. I was mentally paralyzed and couldn’t respond to friends who would email, call, or text. I was already talking to doctors and family about what Wyatt and I were going through. I just didn’t have any more to give. I wanted to know why this happened. That was the million dollar question. My husband and I saw therapists weekly while our son was in the hospital. Talking about Wyatt being born early consumed my life.
One day a few months after Wyatt was home, I just got tired of talking about what happened. I decided I wouldn't feel sorry for myself anymore, though the sadness comes back at different times. It came back when I heard recently about my friend giving birth six weeks early, and when I produced the NICU Journey Beads story. Even when a friend nicely asks how Wyatt is doing — many times I have to hold back tears. The trauma didn't end when Wyatt left the hospital. It didn't end when he started preschool this fall, though I’m a very proud mom.
From time to time these feelings surface and I know they’ll continue. But knowing that other preemie moms are going through the same experience actually really helps.
Sarah Clagett is a mom of two and a producer at TODAY.