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Not just small: Surviving the agony of prematurity

Forever the mother of Charlie and Oliver, Rebecca Clews knows about the devastation of having your babies too early. Here she bravely shares her story in the hopes that other parents might understand – and those who know feel comfort that they’re not alone.

Content warning: This story may be upsetting to parents who have been through prematurity or suffered the heartbreak of losing their child. If you need support please visit SANDS New Zealand or call 0800 Sands4u (0800 726 374). Sands New Zealand is a network of parent-run, non-profit groups supporting families who have experienced the death of a baby. The Neonatal Trust supports parents of children who are premature. 

“Is he your first?”

“Is he your only child?”

“Are you thinking of going for number two?”

As parents these questions are fired at us on a daily basis. They are simple questions with yes or no answers.

They make my heart race, they make me break out in a cold sweat, they send me into panic mode and I want to run as far away as I can.

Yes, he is our first, but no, he’s not – his brother was born eight minutes before him. Yes, he’s our only child, but no, he’s not – he had a brother. And no, we are not thinking of going for number two because we have two. We had two. I still don’t know which tense to use.

Baby Oliver

Baby Oliver

When I was a kid I always knew I wanted to be a mum. I wanted ten children so I could play with them all day. I just knew deep in my bones that motherhood was something that was made for me.

When we finally got pregnant I was so excited. I had constant butterflies and I just wanted to touch my belly all day long. We started planning, dreaming, visualising our family: it would be perfection.

I remember thinking the radiographer must have been holding her scanner wrong because it definitely looked like two blobs. I think I rang our neonatologist friend the minute we got home.

“We are having identical twins! Help me!” I told him.

Our conversation has haunted me ever since, because he asked me what I was most afraid of, and I vividly remember saying “I’m scared these two will be born at 24 weeks and I’ll be in the NICU with you”.

On May 29, 2015, Charlie and Oliver were born at 24 weeks gestation and we began our life-changing journey with Prematurity.

Baby Oliver on his dad's chest

Baby Oliver on his dad’s chest

There are so many things you plan for when you’re expecting a baby. You plan your birth and your support people; you plan for the first few days. You plan the nursery, the feeding, the routines. We all know that often these plans change – babies are unpredictable; everyone tells us this.

Well, our plans were lifted into the air, crushed into a ball, ripped into a million pieces and thrown in the sea. We watched them scatter; they crashed on the shore, floated into the distance, gone.

Labour was terrifying. I remember people asking if I had a “natural” birth, and yes, technically. The boys were born by vaginal delivery, but it was anything but natural. There was a multitude of drugs, there were a ridiculous number of people, and there was not one single second where we could look at our children, touch them, love them.

They were swept away and they started their fight for life.

Baby Charlie is cradled by his dad.

Baby Charlie is cradled by his dad.

When the boys were born they were not just small babies. I mean they were, small.

But that doesn’t cover it. They were tiny – less than 750g each. But they also had undeveloped brains not ready for thinking, small flat lungs that couldn’t hold air, hearts with holes in them and stomachs that did not want milk.

They weren’t just small.

We sat next to our boys and we waited and we hoped. We read them Harry Potter. Over the six months that we spent in the Newborn Intensive Care Unit we finished four books, read aloud, next to an incubator. There is literally nothing else you can do (if you disregard the three-hourly expressing and the constant gut-wrenching worry that occupies your mind 24 hours a day…)

It’s this bizarre mix of heightened emotions, stress and boredom – oh and guilt, of course. That dark, poisonous guilt that reminds you everyday that every single second of this is your fault. You couldn’t hold them in, you couldn’t protect them. You had just one job as a parent and you’ve failed before you’ve even started. Parent guilt is a huge thing, but I think preemie guilt can have the power to destroy you.

When Charlie and Oliver were in my tummy they were very different. Charlie was active, kicking and squirming constantly, whereas Oliver was quiet, waking me gently in the night to let me know he was there. They were the same in the outside world. Charlie fighting the machines that were trying to help him, his body clenching and angry, while Oliver settled into his ventilator and let it breathe for him until he was ready. Maybe Charlie was never ready for this world, maybe his fight was because he belonged somewhere else.

We will never know, and this tears us apart every day and every night.

Three days after he was born Charlie suffered a significant brain bleed and two weeks later, on the 13th of June, our little boy passed away, wrapped against his father’s chest, skin to skin, as we should have had at birth.

Baby Charlie's last cuddle with his father.

Baby Charlie’s last cuddle with his father.

We will never see our two boys crawling around and making mischief. We will never watch two little buddies eating at the table. We will never be two parents snuggling a boy each as they drift off to sleep.

Although I had experienced the death of close family, nothing prepared me for the pain of losing a child.

Nothing compares to that grief. It completely and utterly destroys the person you were before and somehow you have to find yourself again. The only people who can possibly understand are the other parents, the ones who have held their child as they drifted away, the ones who have had to leap backwards to make room for the team of doctors who are rushing to your child to try and keep them alive, the ones who have passed you in the hallway with that look in their eyes that says ‘please don’t ask me how I am today’.

They became our friends and family when it was too painful to be in the outside world. They are the people I contact at 3am when it all just feels too hard, because I know they are up too, and they are feeling the same.

Recently someone suggested it was time for me to ‘drop’ the Prematurity label. I guess she was suggesting I move on…that I need to join the ‘normal’ mums. I don’t like the word “normal” but I struggle so much to find another way to put it, because I feel so abnormal.

Rebecca and Oliver cuddle in NICU

Rebecca and Oliver cuddle in NICU

And that’s the thing about Prematurity – it isn’t just a word anymore. It’s me. It’s us. It runs in our veins now. Oliver was fed with a nasogastric tube up until two months ago; the effect of Prematurity was taped to his face everyday. Casts of his brother’s feet are next to our bed. Prematurity ripped our family apart and has also somehow become the glue that stuck it back together.

Oliver wont be a ‘prem’ forever, he will become a kid, and a teenager and an adult (holy crap let’s not go there). But his brother won’t. So Prematurity will travel with our family forever, because it is synonymous with parenthood for us. We missed out on so much, but this is what we have.

No parent forgets their child’s birth, their first week, month, or year, whether it was the way they had planned it or not. It is that which shapes their parenting life; it reminds them of the magic of having a baby and how you became a parent. But sometimes, when the start is so far removed from how it should have been, it’s hard to think about at all. So we write, or run, or talk, or cry, or scream and sometimes we share this with you, and sometimes we don’t.

And you know what? The one absolute surety I have after all of this, the one big thing I have learnt, is the first thing my mum said to me as I lay in a hospital bed unable to see my children while doctors and nurses tried to bring them back to life: however you do this is the right way.

No one can tell you how to parent, how to settle your child, how to love them. And no one can tell you how to survive, how to grieve, how to live through a nightmare.

And that’s okay, because, I know this to be true: However you do it is the right way.

Baby Oliver at 15 months old.

Baby Oliver at 15 months old.

Rebecca and her family have set up a Givealittle page to raise money for the Waikato Neonatal Unit in memory for their beloved Charlie and in deep gratitude for Oliver’s survival. Please consider donating here so that the unit can purchase a new  cardiac monitor. A cardiac monitor helped save Oliver’s life over and over again, and the Clews Family hopes a new machine will help the unit save many more lives to come.

Rebecca Clews, a 29-year-old pediatric nurse from Hamilton. I love walking, cooking, baking and above all, eating! You can read more of her writing here.

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