Hand to Hold's Official Blog: Written by Parents for Parents

Speaking to the Unspeakable: Lifting the Stigma Around Mental Health After the NICU

When my surviving son was finally discharged from the NICU, he cried for about three months straight. Literally. My husband and I called it the daily “witching hour”, though it was hardly an hour. It lasted on average from 3-8pm daily (in addition to other fussy moments). We researched and researched ways of soothing him. We tried driving, swaddling, babywearing, swinging, reflux meds, playing music (The Velvet Underground and Nico was his favorite album), singing, dancing, jumping around holding him on our shoulder, rubbing his back, going outside, and all kinds of folkloric colic remedies that came to no particularly different outcomes. I was exhausted, deflated, and my feelings of guilt and shame with preterm birth were compounded by the idea that now that I was finally able to be Elliott’s sole provider as a newly stay-at-home mom, I was failing even at that.

The boss and I.

The boss and I.

It was devastating.

That idyllic feeling of walking away from the NICU with our sweet son in tow, of finally being able to exhale a bit of the trauma we had experienced; it dissipated. The fog of depression and helplessness lowered again. And with RSV season and quarantine upon us, no outlet of in-person social support was a viable option.

Additionally, the ways I had adapted to coping with crisis in the NICU stopped serving their purpose– now my hyper-vigilance and anxiety didn’t do anything for me but sever my ability to attach to my son in the way I had hoped. With each milestone didn’t come breathless happiness, but rather a grim acceptance that one small “expectation” was met, that perhaps we had one less thing to worry about. But no guarantees. My training as a therapist failed to help in this matter, as I would perseverate on what I thought could be clues, symptoms, signs that the next terrible thing was about to happen. Even though in my logical mind I could witness myself and realize that my anxiety and paranoia were not helping, I couldn’t stop imagining what next tragedy we might have to face.

I was terrified we would lose Elliott too.

Photo credit K. Wahlin

Photo credit K. Wahlin

In this age of social media, parenting, emotions, family accomplishments and their failures have become very public subjects. It sometimes feels as if the Facebook’s sole purpose is to create an arena in which one can feel bolstered or criticized for their parenting choices. Proud parents post about their blissful moments with their beautiful babies (not to say there’s anything wrong with this!!). Other times, parents’ poor choices “go viral”, and social media users proudly express a moral upper hand, perhaps even posting these sorts of videos/photos/etc. on their own profiles in order to highlight their “difference” from the “terrible” parents in question. To say the least, it’s a tricky world to navigate when you’re coping with some of the less-than-happy aspects of parenting. A status update of “I’m exhausted, frustrated, and don’t want to talk to anyone. I feel angry and aggressive” pales in comparison to a happy new mommy’s expression of joy (again, not to say that happy moms are being mean!). Due to the differences in all of our experiences, many might think that by saying that you’re angry or tired or blue, that you mean you don’t love your child or something is horribly wrong.

The publicity of parenting practices and attitudes is relatively new to our culture, and coincides with a time period in which families often find themselves cut off from the supports found in prior generations (at one time most people lived close to extended family, the community was organized around helping families with new babies, etc.). NICU parents are generally even more isolated than the average new parent; with the added stress of quarantine, a medically fragile baby, and a traumatic birth experience, the perfect storm of crisis can come to fruition in depression, anxiety and PTSD.

Soul Collage card representing grief.

Soul Collage card representing grief.

Compounding everything is the stigma around mental health: it’s frightening to reach out for help when you’re coping with depression, anxiety or trauma. It’s hard to determine whether what you’re feeling is “normal”, or if there’s something “wrong” with you as a parent. The discourse around mental health in the modern western world can also at times imply mental “illness” or “disorder”. Who wants to feel like that?

When you already feel guilt and shame for your little one’s haphazard and terrifying introduction to the world, the added stress of leading a life that is totally unpredictable and sometimes full of sorrow can further detach you from the world and the supports you once knew. As an added “bonus” (sarcasm), the different ways that parents express their feelings of overwhelm can have the effect of pushing each individual away from their partner, scared of causing more harm and/or alienated by their partner’s different behavior.

It’s not fun.

I wish I could write something that could cure all of this. Make it feel better or more reasonable or at least more fair. I can’t. But, I can talk about some of the small things that help.

The most useful thing is finding community. It’s reading stories, hearing stories, communing with others who have been through similar situations. To know you’re not alone is incredibly powerful; to know that having a baby in the NICU isn’t relegated to individuals who “did something wrong” is powerful. In finding others who have been through something similar, you can gather strength and wisdom. It’s also important to be mindful that fathers that go through the NICU need this community too, especially amongst other dads.

Sometimes nothing matches up to its definition. Depression can be expressed as anger. Anxiety can be expressed as exhaustion. Trauma can be expressed as addiction. Unfortunately there is no perfect answer as to what is “normal”. It’s tricky understanding what might be affecting you when there is no strict meaning, particularly when you’ve faced a serious life-altering event like having a baby in the NICU. It’s important to cultivate your sense of mindfulness and self-care, not to gauge whether something is “wrong” with you, but whether some emotion, behavior or thought might not be working for you any more.

Everyone has a different timeline to grieve. We all grieve after the NICU, whether we’ve lost a child or not. Sometimes it takes longer for one individual in a partnership to express it when they perceive that the other has been struggling with it. It can create a bewildering situation in which one partner feels alienated from the other (either from facing the tragedy firsthand or trying to be strong throughout the NICU). In developing a forgiveness for yourself, it’s also important to create a forgiveness for your partner. Actively creating a space to talk about grief, whether it’s through couple’s therapy, a date night, or even just setting aside a few minutes a day to check in with each other, can have an incredibly healing effect on a relationship.

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Photo credit K. Wahlin

Express, express, express. Write, draw, sculpt, scrapbook, run, collage, blog; anything you can do to externalize what you’ve been through in the NICU will make the memory of it more tangible. The more that you can witness what has happened on the page (or in memory), the more you’ll be able to develop a coherent memory of the experience moving forward, and the more you’ll be able to work with the memory and find reprieve.

Coping with the mental health issues and the stigma they carry after the NICU is a challenging and at times isolating experience. Silence around these issues can quite frankly be dangerous. The power of finding community and reaching out for help (even from a therapist) not only battles against the stigma around mental health issues, it will bring healing to your family and you.

Kara Wahlin About Kara Wahlin

Kara (CA) is a marriage and family therapist/art therapist located in southern California. Since the preterm birth of her twin sons Elliott and William at 26 weeks and the loss of William at six days old, she's made it her mission to try and use her skills as a therapist to reach out to help, empower, and nurture other families going through the NICU experience. She loves art, exploring, literature, music and doing wild and wooly projects with her son and husband. You can learn more about her on her website, NICUHealing, as well as her personal website. You can follow her on Facebook or Twitter.

Comments

  1. Thank you for this. I don’t feel like there is nearly enough info and support out there for post-NICU mental health. Articles like this make me feel a little less alone in dealing with post-NICU life. My daughter is now three and looking back I felt like after the NICU we had so many appointments and specialists that I never had time to slow down and deal with it all. Now that we have a lot less appointments and I have more reflection time, it has hit me in the last year and half in so many different ways than I ever could have imagined. I definitely have trigger days, weeks, moments. I’ve been seeing a therapist and trying to do a million other things for my well-being but if you haven’t found another person, outside of your family to connect with on this it can feel very lonely. I was introvert before having my daughter and I feel even more so now. Our NICU does have a family council that I joined a while back but it was more of an event planning group for families currently in the NICU rather than any kind of support. After a full day at work, I decided, even for this few hour commitment each month, I’d rather go home and see my daughter. Therapy and mindfulness activities have helped but I feel like I will deal with this for a long time to come.

    • Hi Becky~
      I am so sorry; somehow I missed your comment when you initially posted. I want to thank you for speaking to these ideas here, I imagine a lot of what you said resonates quite a bit for other readers/NICU parents. I know it did with me. It’s terrific that you were able to acknowledge that the struggle you were experiencing with trauma wasn’t ok with you and that you needed to reach out for help. In my opinion all NICU parents should be given at least 6 months of free therapeutic services after the discharge of their babies– going through a crisis on such a large scale unquestionably warrants it. If you’re interested, I just published a blog post on my site about how being a NICU parent is a little bit like being in a secret society, due to the silence and invisibility of our experiences… You can check it out here: http://www.nicuhealing.com/blog/preemie-parents-secret-society (I think you’ll just have to copy/paste the link). Thank you again for your comment, Becky!

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