The Silent Struggles of NICU Parents: What We Don’t Talk About Enough

As both a counsellor and a mother who’s been through the NICU (Neonatal Intensive Care Unit) twice, I’ve seen the world of neonatal intensive care from both sides of the glass; as a professional supporting families, and as a parent standing there, heart in my throat, watching machines breathe for my baby.

It’s a world that very few truly understand unless they’ve been there. A world of constant beeping monitors, sterilised air, and brave little lives fighting battles far bigger than they should ever face.

The Things People Say (and Don’t Realise Hurt)

When your baby is in the NICU, people mean well, they really do, but the comments can sting. “At least you don’t have to do the night feeds.” “At least you’ll get your figure back early.” “At least the nurses are doing the hard work.” Each of those “at least's” feels like a tiny dismissal of the ache that sits in your chest every moment your baby isn’t in your arms. Because the truth is, you’d give anything to be doing those night feeds. You’d trade the sleep, the body, the freedom for one moment of normality, one uninterrupted cuddle, one feed without wires or fear.

The Unseen Realities of NICU Life

No one prepares you for the sound of your own heartbeat pounding in your ears as you stand beside an incubator, watching your tiny baby through the clear plastic walls. You long to reach out, but sometimes you can’t. Their fragile skin can’t tolerate touch, or their monitors scream when you try. You learn to parent through a barrier. To mother with your hands tied and your heart wide open.

Then there’s the pumping. The relentless routine of expressing milk every few hours, whether your baby can take it or not. It becomes your connection, your purpose, your proof that you’re still needed. You sit in hospital bathrooms, at home in the dark, hooked up to machines, praying that each drop somehow makes its way to your baby. The milk becomes love made visible.

And every night, you have to leave. You walk out of the hospital doors, leaving your newborn behind. There is no pain quite like that, the primal pull to stay, and the cruel necessity to go. You drive home in silence, sleep in bursts, call the NICU in the middle of the night and wake with dread. Every morning, your first thought is, what will I walk into today?

Trust and Fear

You learn to trust strangers with your entire world. The nurses, the doctors, the ones who speak softly, the ones who move quickly, the ones who save lives while you stand helpless. You become both deeply grateful and utterly terrified. Grateful that they know what to do. Terrified that something might happen when you’re not there and with stories like Lucy Letby, the fear becomes too much and outweighs all the good you know the staff do. It’s an impossible balance, to surrender control over your child and still feel like their parent.

When the Baby Comes Home

People assume that once your baby is discharged, the hard part is over. But that’s rarely true. The NICU might be behind you, but the effects ripple on, through weeks, months, sometimes years.

There are the constant follow-ups, the blood tests, the check-ups, the developmental assessments. There are the colds that linger, the infections that land you back in hospital, the long nights of worry. Some children grow out of it; others carry lifelong conditions. And as a parent, your body might leave the NICU but your mind never quite does. Whilst I am so grateful for my sons and never underestimate what could have been; 9 operations later for my eldest, 4 resus visits for my younger son, countless hospital stays and countless blue light emergencies, its been a journey that definitely didn't end with leaving NICU., but somehow, feeling like it was hard was wrong, because I 'should' feel so grateful they were still here and doing well.

You become hyper-aware, scanning for signs, listening for sounds, waiting for something to go wrong. Your nervous system stays on high alert. You’ve lived too close to loss to ever feel fully safe again.

The Lasting Scars: Seen and Unseen

The NICU experience leaves its mark, on mothers and fathers alike. For mums, there can be guilt, grief, and a lingering sense of disconnection, a trauma that can mirror or even trigger postnatal PTSD. For dads, it’s often silent suffering: trying to be strong, holding everything together while their own fear goes unspoken.

Both parents may struggle with bonding, intimacy, or the sense of loss having “missed” those precious firsts. There’s a quiet loneliness in knowing few people truly understand.

Breaking the Silence

As a counsellor, I’ve learned that what NICU parents need most isn’t advice, it’s understanding. Space to talk about the pain, the fear, and the love that coexist so powerfully. Validation that what they experienced was trauma, even if their baby survived and is thriving.

As a mother, I’ve learned that healing takes time. That it’s okay to feel both gratitude and grief. Of course, you are so grateful for your beautiful, living baby but at the same time anticipatory grief is real and painful. I learnt the journey doesn’t end when the machines stop beeping, it just changes shape.

So if you’re a NICU parent reading this: your feelings are valid. The exhaustion, the anger, the sadness, the relief, the love- all of it. You are not alone in this. The NICU is a place of miracles, but also of scars and both truths can exist together. And if you’re supporting someone who’s been there, skip the “at least’s.” Offer presence instead. Because sometimes, the most healing thing we can say is simply: I can’t imagine how hard that was — but I’m here.