Why Don't We Talk About Premature Birth?

04/04/2017 14:19 BST | Updated 04/04/2017 14:19 BST

My baby was born 10 weeks premature.

He spent 8 weeks in neonatal intensive care and I spent 8 weeks visiting him each day in hospital. It was tough.

If you follow my blog at The Smallest Things Charity you probably already know that, I've written about our journey quite a bit! But I didn't always speak about our experiences. Indeed after neonatal care I rarely spoke about our days there at all.

Leaving the safety of the hospital I became isolated.

Family and friends with good intentions thought the difficult times were behind us and meeting new mothers only exacerbated the feelings of loss, jealousy and grief. My journey had been so different, how could I relate to new mothers discussing the things new mums discuss. "I literally couldn't put my baby down" one mum said, "she would only settle if she was was on me". "Mine fed constantly from 7pm - 3am for weeks" said another and "My husband thinks I should go out, but I don't think I can leave my baby yet".

I waited six days to be able to hold my baby for the first time. I had no choice, I left my son, going home without him, on the very day he was born. My son was not attached to me in those early weeks, instead he was attached to monitors, lines and wires.

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Holding my baby for the first time - picture author's own

Our feeding routine was scheduled on a hospital chart, no evening or late night cluster feeds for us. Instead I'd set my alarm, waking up during the night to express milk. You can spot a NICU mum in the hospital. She's the one waiting by the lifts in the morning with a freezer bag. No, not her lunchtime sandwiches, but bottles or syringes of milk - perhaps the one thing that in this strange world allows her to be mum.

How do you share these experiences with other new mums? There really is no comparison in our journeys. When you do describe some of your time in neonatal care that invariably leads to questions; sometimes well-meaning, but often insensitive questions - "Is your baby normal now?" is a question that has stayed with me, as well as the assistant in a well know department store who shouted across the shop, beckoning her colleague to "come and have a look at this preemie baby!"

You try to protect yourself.

Speaking about your experiences can be painful - it's best to move on, right?

Only you can't move on, not in those early weeks and months. The days of NICU have framed who you are as a mother and the shock and uncertainly of premature birth can be long lasting.

Feelings of anger, guilt, loss or jealously can overwhelm you and the slightest cough or cold can terrify you. Bonding with a baby who for weeks or months belonged to the hospital can be hard, and the sound of beeping machines can stop you in your tracks.

You wonder what is wrong with you - it's not normal to feel like this, is it?

You stay quiet.

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Picture - Authors Own

You can't talk to the others mums, they wouldn't understand. You've started to avoid the health visitor because you're worried you will break down if you have to explain to them again that your baby isn't smiling because they've not yet reached their due date. And you don't want to worry your partner because you know they are trying to stay strong too. You begin to feel like a terrible mother, struggling to bond with such a precious baby.

So, we don't talk about it.

And because we don't talk about it we don't realise that our feelings are 100% normal. We don't realise that following neonatal intensive care these feeling are common among NICU parents.

It wasn't until Samuel turned three that I felt strong enough to speak about our journey - a journey that five years on still continues. Through our stories I find comfort that I am not alone and that there are mums and dads who understand.

In 2014 I began The Smallest Things to speak about our journey, through NICU and beyond, raising awareness among professionals and parents alike so that families can receive the understand and support they need.

More information about The Smallest Things Charity and their work to promote the good health of premature babies can be found at www.thesmallestthings.org

A version of this post was first published on The Smallest Things blog.