When Support Is All Around, Yet No Where to Be Found

May 6, 2019
NICU family support, NICU support, life after NICU, mental health, maternal mental health

I felt like this recent Hand to Hold article about mental health and the effect of the NICU on the family was speaking directly to me.

Only now am I beginning to realize the emotional support I craved and needed during my initial days, and in the years after, as a mom of micropreemies. Yes, I was very lucky to have the support of family and friends from start to finish. But I was never deeply challenged to explore the immense shock and terror that accompanied me in those early days and years. I really think it would have served me well, but at the time, I didn’t see it necessary to address anything beyond the daily issues that were constantly bombarding us.

There was so much to tackle: being a new mom, my own physical health, understanding and making decisions about life-threatening micro preemie issues, supporting my partner and our relationship, daily banal decisions about what to eat and what to wear (nothing fit!) and how to sleep and pump, how to accommodate my schedule to the rhythms of two different NICUs, applying for MassHealth and SSI, keeping friends and family updated, figuring out what help we needed.

I likely presented to everyone around us as a concerned new mother certainly, but also as a super-functional, organized mama bear. Afterall, I was balancing a lot and still showing up each day to both NICUs to do it. Asking questions, calling in every night before bed, requesting team meetings. I always answered “fine” to the social worker’s “How are you?” I was fine, wasn’t I? I was barreling through — and what else really needed to happen at that point.


Each night before bed — after our calls to each NICU to ask someone else how our babies were doing — I would begin to cry great heaving sobs of anguish and desperation in the dark. My husband patiently embraced me night after night. As if the sob session was a dream, we awoke every morning stalwart (and exhausted!) – him off to work (with a NICU visit before and after) and me off to the NICUs.

The irony to me is that amid all that help, with hospitals and programs galore in the heart of the medical area, there was no space created for me to explore my own mental health and get the support I needed. I had a faint idea that the NICUs had some programming for parents, but I didn’t spend from dawn to dusk in the same NICU. I was so laser-focused on my fragile babies that I paid little attention to myself. I truly didn’t know how.

Looking back, I would have really benefitted from some attention to my own coping. I needed help breaking through that wonder woman exterior. Yes, it is hugely beneficial to go into super-coping mode when there is so much to handle and get done. But it took years to break down that mode and begin to address my PTSD and related experiences. I am still working on it. I realize it will be lifelong, but I wish I had been aided on a more loving course early on.

While this article post is extremely useful for informing parents, we are often in too paralyzed a state to act on any of it — to see the forest for the trees. I wish for the me of many years ago, and so many others, that all the professional supporters who surrounded us (e.g. neonatologists, nurses, social workers) worked in systems that allowed them to act on this information, whether individually or as an institution. It would have eased my own path tremendously.