September Is NICU Awareness Month: The Story Behind the NICU

Written by: Kristine Page LCPC, LPC, PMH-C

September is NICU Awareness Month.

When we talk about the NICU, we often talk about the babies—and rightfully so. We talk about prematurity, medical diagnoses, tiny babies fighting incredibly big battles, and the nurses and doctors who care for them.

But there is another part of the NICU story that deserves to be talked about, too.

The parents.

The parents who suddenly find themselves navigating a world they never expected to enter.

The parents learning medical terminology while trying to understand what is happening to their baby.

The parents who celebrate tiny milestones that no one outside of the NICU may understand.

The parents who leave the hospital without their baby.

The parents who are constantly waiting for the next update, the next test result, the next milestone.

And sometimes, the parents who bring their baby home but realize that the NICU experience didn't necessarily end when they walked out those hospital doors.

I know this because I was one of those parents.

Before I Was a Perinatal Mental Health Therapist, I Was a NICU Mom

My son, was born at 32 weeks.

I had never imagined becoming a NICU mom.

Like so many parents, I had spent my pregnancy thinking about what bringing home a baby would look like. I had imagined the birth, holding my baby, introducing him to family, and beginning this new chapter of motherhood.

Instead, our beginning looked very different.

We spent five weeks in the NICU.

Five weeks of monitors.

Five weeks of alarms.

Five weeks of learning the language of the NICU.

Five weeks of celebrating things that may sound incredibly small to someone who hasn't experienced the NICU—but felt enormous to us.

There were moments of hope and moments of fear.

There were moments when I felt incredibly grateful for the people caring for my son, while also desperately wanting to be the one caring for him myself.

There were days when I felt like I was doing okay and days when I wasn't sure how I was going to keep putting one foot in front of the other.

And somewhere in those five weeks, I began learning something I would carry with me long after we left the NICU:

A NICU experience doesn't just happen to a baby. It happens to an entire family.

Leaving the NICU Doesn't Mean You Leave the NICU Behind

Eventually, the day came when we got to take him home.

That should have been the finish line, right?

In some ways, it felt like we had finally made it.

But going home brought its own set of emotions.

After spending weeks surrounded by monitors, nurses, doctors, and people watching my baby, suddenly I was at home.

There were no monitors.

No nurses coming in to check on him.

No one reassuring me that everything was okay.

Just me, my baby, and all of the things I had experienced over the previous five weeks.

I learned that you can be incredibly happy to finally have your baby home and still carry fear from the NICU with you.

You can be grateful that your baby is doing well and still struggle with anxiety.

You can know logically that your baby is safe and still find yourself checking to make sure they are breathing.

You can celebrate how far your baby has come while simultaneously grieving the beginning you thought you were going to have.

These experiences aren't contradictory.

They can exist at the same time.

The Emotional Impact of the NICU Is Real

My experience as a NICU mom is one of the reasons I became so passionate about supporting perinatal families.

Over the years, I've learned more about the ways NICU experiences can affect parents emotionally and psychologically.

Parents may experience anxiety, depression, intrusive thoughts, hypervigilance, grief, guilt, difficulty sleeping, or symptoms related to trauma.

Sometimes parents don't even recognize what they are experiencing as a response to trauma.

They may simply think:

“I'm just being overprotective.”

“I should be happy. My baby is home.”

“Other families had it much worse.”

“I don't have a reason to feel this way anymore.”

But your experience doesn't have to be the worst experience imaginable for it to have had an impact on you.

Your experience matters.

What I Wish More People Knew About NICU Parents

As both a therapist and a former NICU mom, there are a few things I wish more people understood.

Ask the parent how they are doing.

Not just:

“How's the baby?”

Ask:

“How are YOU doing?”

And then give them space to answer honestly.

Don't assume that a healthy baby means a parent isn't struggling.

A baby can be thriving while their parent is still processing what happened.

Don't minimize the experience.

Statements like “At least your baby is okay” are usually meant to provide comfort, but they can unintentionally make parents feel like they aren't allowed to acknowledge the hard parts.

Understand that grief can exist alongside gratitude.

NICU parents can be profoundly grateful for modern medicine, skilled medical professionals, and their baby's progress while still grieving the birth and postpartum experience they imagined.

Remember that healing isn't always immediate.

Some parents may feel the emotional impact of their NICU experience months or even years later.

Sometimes it takes distance from the experience before a parent has the emotional space to process what happened.

My NICU Experience Changed the Work I Do

Our NICU experience is one of the threads woven into the work I do today.

It is part of why I became passionate about perinatal mental health.

It is part of why I wanted to better understand birth trauma, postpartum mental health, and the unique experiences of NICU families.

And it is part of why I believe so strongly that parents deserve support—not just while their baby is in the NICU, but after they come home, too.

I know what it is like to sit beside a tiny baby and wonder what the next day will bring.

I know what it is like to celebrate milestones that suddenly become incredibly important.

I know what it is like to walk out of the hospital without your baby.

And I know what it feels like to finally walk out with your baby.

That lived experience doesn't make me an expert on every NICU family's story. Every family's experience is different.

But it does give me a deep understanding of why the NICU story deserves to include the parents, too.

This September, Let's Remember the Whole Family

NICU Awareness Month gives us an opportunity to celebrate the strength and resilience of NICU babies.

But let's expand the conversation.

Let's talk about the parents who sat beside those incubators.

The parents who pumped breast milk around the clock.

The parents who learned to take their baby out of an isolette.

The parents who celebrated the first bottle, the first breastfeeding attempt, the first time holding their baby, the first day without oxygen, and eventually—the day they got to go home.

Let's talk about the parents who are still carrying pieces of that experience.

Let's ask them how they are doing.

Let's listen without trying to fix or minimize.

Let's normalize seeking mental health support.

And let's remind NICU parents that they don't have to choose between being grateful and acknowledging that it was hard.

Both can be true.

Your baby can be okay, and you can still need support.

You can be grateful, and you can still grieve.

You can love your baby more than words can explain, and you can still struggle with what happened.

And you can move forward without having to pretend that the experience never happened.

To the NICU Parents

If you are a NICU parent, whether your baby came home yesterday or your NICU experience happened years ago, I want you to know this:

Your story matters.

You don't have to minimize it because someone else had a longer stay.

You don't have to be “over it” because your baby is doing well.

You don't have to feel guilty for having complicated emotions.

And you don't have to walk through the emotional aftermath alone.

Sometimes healing isn't about forgetting the NICU.

Sometimes healing is about being able to remember it without feeling like you are still there.

This September, as we recognize NICU Awareness Month, let's remember the babies—but let's remember the parents, too.

Because behind every NICU baby is a family whose story began in a way they never expected.