Mourning a Loss That Doesn’t Quite Have a Name: Grief and Loss in the NICU

February 13, 2015

I think it’s safe to say it’s happened to most of us NICU parents. That piercing feeling, almost like a knife inside, that strikes when you least expect it; in fact, when you’re likely to feel the most ashamed and/or hurt by it.

When you see a pregnant woman striding down the street, clearly weeks later in her pregnancy than you were able to carry. When you peruse Facebook announcements proudly proclaiming beautiful chubby sweet infants that were delivered without issue. When you have to opt out of a holiday party because it’s RSV season and the prospect of your baby getting sick is too much of a fear to be able to attend it without intense anxiety. When you think back to those initial moments you were able to spend time with your baby, and shudder to think that you weren’t able to hold them to your chest, or sometimes, touch them at all. The fears you once held about changing their diapers, disturbing one of the wires attached to them, or their breathing equipment. The feelings associated with having to ask permission to touch them. Having your parenting on display in a hospital unit, as opposed to being the very private experience you had imagined it would be. When you hit your estimated due date, and gaze upon your baby, who’s been on the outside for awhile, laying in their incubator at the NICU. When you start experiencing anxiety and panic, as opposed to joy, as you approach their first birthday, and the memories of what their first days and weeks were like flare up and become vivid again. I used to wake up in the middle of the night feeling phantom kicks in my belly, only to realize that my son Elliott was still in the NICU, his twin William was gone, and it was time to pump milk.


photo credit: John McGibbon

This is loss. This is grief. And this is an experience very common to all parents that have to face the NICU, regardless of whether they’ve lost a child or not.

In our culture, there isn’t much of a space allotted to individuals coping with grief. The common theories that are held in our culture are those outlined by Freud and other psychoanalysts. Most of these theories claim that the “end stage goal” of grief is to come to “resolution”, “find closure” or to “move on” after a loss. Oftentimes grief is cleverly outlined as something that can be predictable, that there are aspects of it that you can recognize as “normal” or the correct “stage”. This creates a challenging space for those experiencing grief, because it can feel as if there’s something wrong with you if you can’t seem to let the loss go after a delineated period of time. It overlooks the feeling that you’re deep in an abyss, without much to recognize your surroundings by, that your world may look unfamiliar in comparison with what you once knew.

This brings unique challenges for someone like a NICU parent, who has gone through a loss that you can’t quite put your finger on. If you are able to leave the NICU with your now-healthy baby, our culture asks, why are you still dwelling on the pain that you felt at that time? What is it that you even lost?

There are many answers, an important one being that we lost an older version of ourselves. We lost our self that lived in a world that pregnancies end without complication or trauma. We lost our sense of predictability. We lost weeks of our pregnancies, and as a trade had to watch powerlessly as our babies fought for their lives in a tiny plastic box miles away from their homes. We lost our right to make some of the first decisions for our babies. In some cases, we lost all the “normal” bells and whistles of a birth: showers, announcements, flowers and congratulations. We lost our ability to watch our babies grow without anxiety over their development. We lost our sense of “expertise” over our parenting experience, and oftentimes, we had to allow others to take the helm with therapies and medical technique in guiding us through their infancy and early childhood. We lost the ability to try for more children without the constant fear that they might spend time in the NICU, too. We lost our sense that the people around us understood. We lost a lot.

As with grief and loss in the case of the death of a loved one, NICU parents are often implicitly expected not to speak of their grief. Grief is an uncomfortable feeling for many individuals, and discussion of it can be interpreted as “morose” or “not looking at the bright side”. In my experience, this creates a “hiccup” in time. I went from my older self to this new, NICU mom self within a three day time period of pre-term labor, and struggled with how to come to terms with the vast differences that erupted. In fact, for awhile I forgot about my old self; I let her go and embraced the NICU mom self as my sole identity. The things I had cared about before seemed trivial and unimportant, and now everything was about survival.

elliott reaches out

photo credit: John McGibbon

In creating a space for grief, it can be beneficial for NICU parents to meditate about what it is that they lost through their experience. To name it. To embody it. To describe our relationship with it, and to integrate it into our lives in a way that feels meaningful. To recognize that loss; that loss that inexplicably binds our experiences to other parents who also went through a painful experience. In doing so, we not only provide ourselves with a healing space, but we also gain an incredible skill: the ability to teach our children about grief in a culture that would prefer to look away from it. The one thing that it is safe to say we “know” about grief is that if we are feeling it? Something important, something we loved; it is missing.

How does your grief play a role in your day to day life? Have you ever been able to give it voice? Have others acknowledged the loss or do you find yourself silenced when it bubbles up to the surface? Does the loss bring anything valuable to your current circumstance? Does it bring anxiety or negativity with it? Is there anything about your former self that you can bring with you into this new part of your story? If so, what is it?

In what ways have you grieved the loss you experienced when your baby was in the NICU?