10/09/2018 17:04 BST | Updated 10/09/2018 17:04 BST

Why Are NICU Parents Like Me So Underrepresented In The Media?

We want to feel normal just like everyone else, we want to feel as though society sees us as equals to every other parent out there

Vicki Cockerill

Standing in the hospital shop, I looked up at the parent magazines showing beautifully made-up mothers and their happy smiley babies and cried. I had just waddled from the NICU (neonatal intensive care unit), where I sat next to my baby only being able to hold his hand through the hole of the incubator.

I couldn’t pick him up. I couldn’t feed him. I couldn’t dress him because of all of the wires. He was only hours old yet we were apart. We slept in different rooms, impenetrable double doors and corridors between us. A deep knot in my stomach tightened as I realised none of these parenting magazines had anything I could relate to.

There was no representation of what I was going through right now. No top tips on how to bond with my baby, how to establish a feeding and sleeping routine in NICU surrounded by doctors, nurses and complete strangers. It was as if NICU didn’t exist outside of the hospital, as if it was to be left behind at the automatic doors.

Why aren’t we talking about NICU? Why as a NICU mum do I feel like I have failed because I cannot live up to the images I see every day in the media? Why aren’t we talking about NICU in antenatal classes? Why are we leaving new parents to be ambushed after just giving birth to find yourself in the unknown territory of the NICU ward? You’re thrust into a world you didn’t ask for, you didn’t know anything about at a time you should be celebrating the happiest time of your life.

According to Bliss, the leading charity for premature and sick babies, the majority of hospitals in the UK are not meeting the national standards of having psychological support on offer to NICU Parents. But still we have nothing in the media to relate to, unlike nearly every other aspect of parenting. We are hastily pointed to online groups, hospital literature and charities. We spend hours scrolling through parenting forums looking for something to make us feel a tiny bit better, or at least understood.

Other than a post on Facebook raising awareness or a breaking news story, what was the last time you saw NICU parents being represented in the media? Gracing the cover of a parenting magazine? Seeing themselves as a parent demographic being accurately represented?

Because that’s what people forget, we are still parents too and we want to feel valued. Pampers recently launched a premature nappy range and showed images of premature babies and NICU in their ads. Some soaps have also written a storylines now and again.

We want to feel normal just like everyone else, we want to feel as though society sees us as equals to every other parent demographic out there. You could argue that no, people don’t want to see NICU babies or wards plastered across the media - it can make others feel uncomfortable. It may bring painful memories back. It may scare new parents. But for one in eight babies, and their parents, this is real life.

Parenting has been revolutionised by social media. Guides on feeding, sleeping, mental health and real life experiences can be found at the click of a button, and slowly there are more NICU blogs and articles filtering through. Reducing the stigma around mental health and pregnancy loss began with us openly talking about these subjects on and then offline. Two taboo subjects that have found their way into the mainstream media. A few years ago you would never have imagined an article in Reveal about a mum’s battle with post-traumatic psychosis.

NICU parents are underrepresented in the media. If we talk, we learn from one another and when we share we help normalise it.  We become aware of issues and we can begin to change them for future generations of NICU parents. I want to be able to open a magazine and read tips on how to help dad’s bond with NICU babies, I want to see a NICU mum being represented on TV. I want to see parenting websites that have information on how to spot post-traumatic stress disorder in NICU parents. I don’t want a few crumpled leaflets that get left in a hospital room.

We are not a small majority of parents - we make up 95,000 of families experiencing NICU in the UK every year. Babies will continue to be born early or poorly, it is a cruel hand to be dealt but never the less a fact of life. If we began to see adequate features of NICU parents, stories, issues in the media we would begin to start a conversation, and we wouldn’t feel as though we have tumbled down the rabbit hole. We would feel more educated, more aware and slightly more prepared.

Perhaps then a new mum sitting on a bed in a side room alone, sore, terrified with tears streaming down her face as she can hear the echoes of the nearby babies crying can find something she needs more than she has ever needed in her life: hope.

Vicki Cockerill is a freelance writer, NICU/CHD mum to two boys and author of The Honest Confessions Of A NICU Mum blog