Having micropreemie twins taught me it’s OK to grieve for babies who are still alive

The very small room made my already large hospital bed look massive. The room was eerily quiet. To call it drab would be an understatement. The nurses called it a recovery room, but I found myself wondering if it was instead just an empty storage closet meant for things no one needed anymore.

I looked over to see my husband slumped over on an uncomfortable hospital chair while trying to use the wooden arm as a pillow. He was exhausted. We were waiting, but I didn’t really know for what. Just minutes before, I was 24 weeks pregnant. But now? I sit feeling empty and being empty in every possible way.

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Immediately after being pulled from my womb, my micropreemie twins were taken to what I assumed would be the NICU. Even though I had just been cut open and sewn back up, nothing felt more distressful than the fact that they were gone and I had no idea where my babies were. I was awake and still numb from the anesthesia, but aware enough to feel like a complete afterthought. The babies had been born and, even if I only earned a D- in pregnancy, I had done my job. I, the once pregnant mother, was no longer important.

I didn’t realize it at the time, but the unofficial tone for my perinatal mental health was established there in that beige, so-called recovery room. My twin boys weighed 1 pound and 10 ounces each and were almost immediately intubated. We didn’t know it at first, but both boys had suffered brain bleeds around the time of birth. As they continued to fight for a chance at life, it was revealed that their hearts were broken.

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At 4 weeks old, Lex (my baby B), underwent heart surgery barely weighing two pounds. One week later, Lochlan had his first of three brain surgeries. That surgery itself caused a second severe brain bleed. After countless ups and downs, setbacks and triumphs, my two-year-old daughter, husband and I took our twins home on day 101 of life.

We left that day with two sets of oxygen tanks and over 20 follow-up appointments and a feeling of gratitude for life that I could never properly put into words. Our boys had survived and because they were no longer critical, most friends, family, coworkers and even doctors treated me like the fight was over. We had won the war. I was told countless times that I was “so strong.” People repeatedly said to me, “I don’t know how you do it. I could never.”

Related: My NICU experience shaped the way I parent—even three years later

Adjusting to life with any newborn is challenging, but for me, having a 2-year-old and medically complex micropreemie twins on oxygen felt like a lot more. Having so many people tell me that I was strong somehow made me convince myself that I was. Looking back now, I don’t know how I survived without a complete mental collapse—because I was not strong. I simply survived.

I finally began to feel the weight of everything I had been carrying, but it wasn’t until two years after my traumatic birth that this weight began to physically, emotionally and mentally suffocate me.

The twins, their health and their needs had been all-consuming for not only me, but everyone around me. I also knew how incredibly lucky I was that my twins had survived. The micropreemie Facebook groups I was part of reminded me of this often when I would hear of preemie loss. Furthermore, I did not feel I had earned any right to feel grief because my children were alive. I just accepted that it was difficult to manage life with the twins now at home. I also believed that I was strong. And aside from one doctor running through a laminated screening for postpartum depression at a routine follow-up, no one was checking in on me.

Related: Spotting postpartum depression can be difficult. Here’s how to enlist your partner’s help

As the months went on, my perceived strength began to reveal its truth. My body began telling me that I had not conquered any trauma whatsoever, as I had thought. I finally began to feel the weight of everything I had been carrying, but it wasn’t until two years after my traumatic birth that this weight began to physically, emotionally and mentally suffocate me. Aside from my husband, no one saw how badly I was struggling. He probably didn’t see the full magnitude either. My anxiety became debilitating, and I was under constant stress for the fear of another hospital stay for my immunocompromised twins. 

When I finally decided that I could not continue feeling like this and maintain a healthy family, I sought help. The doctors said I had some anxiety, but weren’t willing to recommend medication. They told me that if it “got worse” I could come back to talk about getting a prescription. I hate that as a mother, I had to ask for help in my weakest moments and was made to feel like my symptoms weren’t that bad. I tell you now, they were that bad.

Related: What no on tells you about having preemie babies

I began seeking support from other medical professionals because I not only needed help, but I more so needed someone to validate that I was, in fact, struggling. This idea of strength I had been led to believe that I was had been nothing but a decoy to the trauma I had not yet had the mental capacity to withstand.

At my weakest, I went in for an annual exam as a new patient and met Ann, a nurse practitioner. In telling her about my medical history and about the twins, she listened as if I was the only priority in her day. She then gave me a gift I did not feel I was deserving of when she said, “Do you even realize what you went through is similar to what parents of pediatric cancer patients deal with?”

Tears immediately rolled down my face and she handed me a tissue. She absolutely released me on that day. It was the first time that, for me, it clicked. What I heard her say was, “You have lost a lot, and in almost losing your sons, there is grief in that loss. I am giving you permission to grieve.”

And, for the first time, I did just that.

A version of this story was originally published on October 4, 2022. It has been updated.