When the Crisis is Over But You Still Don’t Feel Okay

I’ve had the privilege of working with parents of critically ill children at The Ronald McDonald House here in Austin.  I was a counseling intern at the time, and the experience affected me so profoundly, that I decided to devote my graduate school research to better understanding NICU trauma, and its deep and lasting impact on parents.

When families return home after extended NICU stays, it is often seen as a celebratory time.  Photos are taken, the car is packed, and a beloved infant finally gets tucked into a car seat to go home for the first time. 

Yet my clinical experience has shown, and the research bears this out: hospital discharge is a highly fraught time for many families, especially those who have endured extended NICU stays. The home they return to may feel different than the one they left. To be sure, the parents are a fundamentally different couple than the ones who went to the hospital to deliver their baby weeks or months earlier; indelibly and forever shaped by the trauma that is an inherent part of long-term NICU experiences.

What’s more, there may be healthy siblings at home with needs and post-NICU anxieties of their own; they, too, are adjusting to the new baby in the house, who may be fragile and attached to medical equipment. The doctors, nurses and specialists who were just down the hall at the NICU, whom parents could turn to at any moment of uncertainty, are now miles, sometimes hours, away.

To me, this is one of the things that can get missed when we, as counselors, think about supporting families with medically complex infants or children: the journey does not end at hospital discharge. For many NICU families, returning home is when some of the most profound challenges really begin, and when mental health resources can be pivotal to families adjusting to their new normals.

As counselors, we may want to consider screening all parents who present in our practices about their birth experiences, whether they are young, new parents or middle aged empty nesters. Because NICU trauma, especially when it has never been treated, can be enduring.

In my previous career as a journalist, I would research and write about a topic like this, interview those affected, broadcast my story, and then sign off. 

Now, as a counselor, I have had the great privilege of staying with these families; accompanying them on their unexpected, often unwanted, journeys. These families, like all my clients, are my teachers. I plan to share what they’ve taught me here in these pages along with what the research says about their experiences, and how we can better support NICU families. 

If you’re a parent, I hope you feel seen here. To my fellow clinicians, I humbly offer my insights in the hopes that you may see your parent-clients from new perspectives.

Amy Costello is a counselor, writer and former journalist whose work focuses on trauma, grief, and how those experiences shape us.