What does prematurity mean to you?

15 million babies are born prematurely each year. That’s more than 1 in every 10. It means millions of families have gone through the trauma of early birth in 2021 alone. It means 1 million tiny lives have been lost; lives that had hardly begun before they were cruelly curtailed. It means many more who are now facing a lifetime of disabilities and impairments. It also means millions of miracles have taken place. Millions of miniature superheroes have prevailed against all odds. They have fought the most relentless and toughest battles that life could throw at them. And they have endured and clung to life with the strength and perseverance of warriors.

Today, 17th November, is World Prematurity Day, raising awareness of the challenges of premature birth. I wanted to explore what prematurity means to different people so I posed the question, ‘What does prematurity mean to you?’, on social media channels and these are the answers I received.

They are from parents of preemies, charities, nurses, doctors, health workers, people who have plenty of experience of the issues of prematurity and those who have none. Some are heart-breaking and others are heart-warming. Many are both. Some are negative and others positive. Long, short, poetic or factual, all the answers shed light on what the experience of prematurity entails. They emphasise the impact that a premature birth can have on a family. They give us a rare and poignant window into parents’ most traumatic memories of neonatal intensive care. They provide a snapshot of daily life in the NICU (neonatal intensive care unit). And they highlight the love, care and dedication of parents and other family members towards their babies.

Prematurity is shock, fear, wonder, amazement, silver linings, exhaustion, feeding a breast pump rather than your baby, finding out how strong you are when you have to be, feeling utter bliss when you get to do kangaroo care and the depths of despair at witnessing what your baby, and others, have to go through. Prematurity is being changed in your heart forever.

Prematurity is hard work.

It’s phoning the hospital before you go up first thing in the morning so you know what to expect, or having a nightmare and having to phone the hospital at 2am.

It’s teddy bear face stickers and Duoderm, Zachy hands and NG tubes, nasal cannulas and shaved heads.

It’s vulnerability, fragility, potential transience and the strength and endurance of a warrior.

Prematurity is calling every night at the same time even though I left a hour ago! It’s getting up early to make his first morning feed and in time to hear the doctors run down/hand over.

Prematurity is stumbling through a maze blindfolded. Each day starts with a question mark, and ends with one. We live with uncertainty and silently we ask ourselves, ‘how long?’

It’s nature’s way of saying: let us be patient and allow this flower to blossom in its own time. The most beautiful flowers often take a bit of nurturing.

It’s biting back words that can not be said, stifling feelings that must not be felt until our insides become a reservoir of silent agony. Maybe it will be over one day. Maybe.

Prematurity is a rollercoaster ride in a war zone. Our own thoughts and feelings are our torturers, wires twisting in the brain, powdered bamboo slicing through guts. We carry on somehow. One day we may look back and marvel at the endurance of the human spirit.

Prematurity means strength, bravery, vulnerability, fear and admiration.

It’s the miracle of life quite literally developing before your eyes.

It’s repeatedly being told ‘isn’t she small’ by complete strangers. It’s doctor’s appointments, consultant appointments, dietitian reviews, referrals, x-rays, scans, separation anxiety, PTSD….

It’s putting a tiny heart on each and every 1ml syringe, 10ml bottle, and 50 ml bottle of expressed milk you make for your tiny warrior – just to feel a tiny bit closer when you have been sent home and can’t be there giving it to him yourself.

Prematurity is constantly worrying about absolutely everything. It’s about pumping the tiniest bit of milk. It’s wondering if you’ll ever get off the NICU rollercoaster. It’s the fear of bringing them home with no monitors or nurses. It’s the wonderful feeling when you’re finally allowed a cuddle.

It’s the smell of Clinell wipes. I’d recognise that smell anywhere now!

Prematurity to me is the constant battle of feeling like a bad mum choosing between my toddler crying for me at home or my baby in hospital and trying to find the balance of where you’re needed more.

It’s your whole entire body filled with anxiety, depression, separation from your child, walking out of NICU crying because you don’t feel like a mum to your baby, not being able to pick them up when you want to. Phoning the hospital every few hours when you’re not there to find out how they’re doing. Its your heart sinking when they take a step back just before they’re coming home. It’s just heart-breaking for any preemie mummy – that separation from your child for however many weeks or months they’re in there for, feeling like you’ve failed as a mummy and everything’s been taken away from you.

Prematurity is people asking how you do the constant hospital trips and appointments and responding with ‘it doesn’t get easier, you just get used to it’.

It’s constantly being asked “so when is she coming home then?” and fighting back tears because you don’t know when you can take your own baby home.

It’s looking at syringes or sterifeed bottles and seeing them filled with milk.

Prematurity is panic when your phone rings and you’re not at the hospital!

It’s definitely hospital nuk bottles and sterifeed bottles!!

It means being constantly ‘reassured’ by strangers that their friend’s cousin’s wife’s uncle had a premature baby and they grew up to be 8ft tall and fathered 16 children.

It’s still suffering the effects 5 and a half years later.

It’s sore and dry hands and constant pumping everywhere I went.

10 years later it’s everything being blamed on it instead of being investigated!

It’s the sound of constant beeping of the monitors and the alarms that make your heart sink.

Prematurity is feeling lost on a maternity ward full of Moms and babies when you didn’t get to meet yours yet because he was whisked away, and then you go in and all these machines are beeping and you can barely see their face for tubes and wires. People saying he will be fine he’s in the best place when all your mind is letting you think is omg what if he’s not OK?

It’s hearing the beeps in your sleep and waking up in a panic…. when you do actually get some sleep. It’s the swoosh of the doors when you’re going in, the low hum of noise and machines with the alarms going off.

It’s not feeling excited to go home, instead it’s feeling sick with worry. And the soap, you never forget the smell of the soap. It’s hating the words “no caller ID”. It’s the pit in your stomach when you walk in and there’s more than one nurse/doctor around your baby. It’s not feeling like your baby is yours.

Prematurity for me is feeling helpless, constantly hearing ‘they’ll be fine, they’re here for a reason’, even though we were told, ‘prepare to let your son go’. It’s people trying to sound positive, but not really knowing what each second, minute, hour or day will bring as they don’t see what you see. Prematurity for me is watching my tiny boy being worked on a number of times.

It’s feeling helpless while you put your trust in total strangers that then become family. It’s going to the parent room to cry and talk to other parents about what’s just happened. It’s making friends for life…worrying everytime your phone rings… choosing between our 2 children at home 100 miles away and our baby in NICU! Prematurity is 2 steps forward 12 steps back… people asking when is she coming home and you don’t have the answer. It’s looking forward to a bottle or breastfeed. It’s watching my children meet through some glass doors for the first time because of Covid-19. It’s the UK being on lockdown and you and your husband doing a tour of the UK following an ambulance to the 5th different hospital she visited and some more than once. It’s the BEEPING, it never leaves you. It’s blaming yourself and telling yourself you failed your baby and family because you only kept her safe for 20 weeks when your waters broke. It’s looking forward to the next cuddle when your baby was stable. It’s feeling thankful to all the strangers (now family) who never gave up and saved your baby!!

Prematurity means sitting on a ward while everyone is feeding and cuddling their baby while I’m all by myself and my baby is sat in NICU. It broke me.

It’s being thankful for the little miracle you love more than anything in the world.

It’s crazy frog on repeated adverts whilst rooming in for 2 weeks, NG tubes, lumbar punctures, fear, juggling siblings, endless pumping, crying, endless car journeys, empty arms.

It’s my little girls in NICU. I couldn’t hold them. I saw them and they were whipped straight to neonatal, I didn’t see them until later that day. I was on the side room of the ward hearing all the mums with their babies and mine were downstairs. I felt like I lost them; it was hard. The phone calls, the beeping, just everything really.

It’s definitely the machine beeps; they’ll stick with me forever!

Prematurity is the memory of crying all the time, feeling empty, guilty and a horrible sense of dread, extreme loneliness, having to ask permission to hold my own baby, relying on nurses and doctors to tell me about my own child, feeling like a cow on the pumping machine, not being able to walk properly, NG tubes, oxygen sats, constant fear. Even 9 months later the whole thing still traumatises me, but he’s doing amazing.

It’s cracked hands from hand washing, sore backs from spending hours in those awful chairs, snuggling little square blankets in place of your baby and dutifully swapping them every day. It’s all the medical terms and abbreviations you pick up and start to sound like a nurse yourself!

It’s being too frightened to fall in love because you don’t really believe they’re ever coming come. Hands that are raw from washing them more than you ever thought was possible. Giving birth and then waiting months to feel like a parent. It’s waiting months to be able to kiss your baby goodnight for the first time without a plastic box separating you. It’s learning a whole new language you never wanted to learn. It’s jumping and feeling the dread in your stomach even years later when a sats monitor beeps and catches you unaware. It’s wondering how something so small can be so tough and teaching you more about love than anything ever could.

Prematurity is a whole other world you will never, ever be able to describe to someone that hasn’t lived it, no matter how much detail you go into. It’s having to pre-warn your family about what they’re stepping into, and what they’re going to see, and seeing them shatter when they meet for the first time. It’s having to dig through wires, tubing and rolled up blankets to find the tiny baby that lives inside a giant box. It’s a first cuddle full of worry and anxiety. It’s celebrating things that the outside world would see as silly, yet in your world it’s the absolute best! Tiny nappies you wouldn’t dream would ever fit a baby. Being stood outside having a breather and watching as excited parents take their newborns home and feeling your heart shatter.

Prematurity to me is just a never ending feeling of fear.

It’s never being able to give a straight answer to, “So how old is he?”

It’s listening to new dads argue with midwives that their partner needs space from their newborn to sleep, when you haven’t even held yours yet. It’s learning how to change a stoma bag before the third trimester. Being stuck in a lift with pregnant women who share your due date, and your baby is in theatre for the second time in 11 weeks. It’s taking my baby out with the oxygen for the first time, and everyone assuming she was a newborn. Most importantly, it’s realising who my friends are, the love, support and strength I found from people I hadn’t spoken to in years, the community of people I have met since, and my little warrior child, who surprises me every day.

It’s NG tubes, praying, anxiety, that first hold, dreading the phone ringing, getting the first bus that runs on a morning, finding tiny clothes, love, finding friends in doctors and nurses, forgotten self care. Prematurity is something you can never fully describe.

Prematurity is a battle. My head says he needs to be in hospital so I can’t bring him home and my heart says he needs to be in my arms at home.

It’s going through a life changing experience that makes you grow and appreciate life a different way, at the same time putting an emotional wedge between yourself and your loved ones because if you’ve not lived NICU, you just can’t even begin to imagine what it’s like to support someone that has.

It means getting freaked when I get “No Caller ID” calls, to date.

Prematurity is a complete shock which throws your world upside down. The excitement of being told you’ll be meeting your baby sooner only to then have them whisked away immediately and the crushing realisation that they’ll be in hospital for weeks or months and are likely to have more medical intervention than you or anyone you know have had in your entire life to date. Also, constantly being asked how old he is by strangers and feeling a weird need to ‘explain’ prematurity’. And people saying “the newborn phase does pass” and not realising our newborn phase is much longer than anyone else’s. Expecting to be able to exclusively breastfeed, but having low milk supply due to what we went through.

Prematurity is an experience you will never forget. It’s a whirlwind of emotions that shows how strong and resilient your little one is, and shows that when you can cope with this, everything else in life seems so much easier. It also helps bring people together who are in the same position, giving you the chance to tell others that everything will be ok thanks to the amazing staff in SCBU across the country.

It’s fear, uncertainty, worry, miracles.

It’s going home without your baby even though they are alive, going back and forth day and night.

It’s the envy watching dads bringing car seats in to the maternity unit to take their brand new baby home while you’re on your way in to see your tiny baby bird. Not being able to wear that one coat I wore all last winter because the sound of putting it on and off sends me right back to NICU.

It’s my little sister. She’s so funny and cute and I love her so much.

It’s monitors.  Bleeping monitors, nurses reassuring minute by minute, brady’s and desats. 45 minutes to feed 17ml because the carobel is too thick.  Angry at paternity rights for dad. Dressing baby after over a month of just a nappy. Blood transfusions are exciting. LOVE, absolute love, heart wrenching love.

Prematurity is a pale, gaunt face with deep circles under its eyes. It’s a constant reminder that things are not ok. Will they ever be ok?

To me it’s a whole new and unexpected world. A whole new language. A new and continuing education. It’s a broken heart when it wasn’t enough.

Thank you to all those who bravely shared their thoughts about prematurity and what it means. In the words of Laurell K. Hamilton, ‘There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.’