1 in 13 babies are born prematurely in the UK.
60% of babies admitted to NICU are born at full term.
70% NICU mums suffer from post natal depression.
33% NICU Dads and 53% Mums diagnosed with PTSD. It’s likely these numbers are higher.
Facts from Miracle Moon UK (https://www.miraclemoon.co.uk)
We had no idea we would ever need the NICU (Neonatal Intensive Care Unit). My first pregnancy with my daughter was low risk throughout. Think poster girl pregnancy - high energy exercise classes, a beautiful baby shower and then a gorgeous water birth with a lovely car seat photo on our way out. So my story isn’t here to scare expectant Mums. It really can be straightforward, easy and pain-free (thanks hypnobirthing). Which is why my second pregnancy was such a shock to me. Although my second pregnancy had been considered high risk, there was never any mention of a premature birth, a CAT 1 c-section or a special care stay.
The first thing I have to say here is that I don’t actually know the whole story of my son’s birth. I’ve spoken to so many professionals who have been amazingly helpful in helping me try to fill the gaps, but there are still gaps. I woke up at 35 weeks pregnant with a few cramps and a little spotting. If I’d been full term I wouldn’t have thought anything of it but something in my gut told me to phone just to ask. It’s worth mentioning here that I’m the sort that avoids bothering people at all costs. But you really must. I’m forever in debt to the midwife that answered the phone that night who suggested I came in just to be checked. If we hadn’t gone into hospital then I wouldn’t be here to write this story today and neither would our gorgeous boy. In hospital I had a big bleed as my placenta came away from the wall. There’s probably a much more technical explanation but I’m a teacher, not a medic. I was put to sleep and our baby delivered and whisked off to NICU. I was still under whilst my partner told everyone our baby had arrived. Everyone else (it felt) saw photos of our baby before I’d even met him. Everything everyone did over this time was with the best of intentions. But when you go through a trauma, it’s hard to always see that. You see when you have a premature baby meeting them is (often) different and holding them can be even weirder. For days we didn’t know what time he was born at. We’ll never know what his true birth weight was and no one really knows why everything turned out like it did.
We spent 9 days in NICU. It doesn’t sound a lot does it? Shorter than a fortnights holiday. But it’s 9 days of tubes and noises. 9 days of unexpected news. 9 days of highs and real lows. 9 days of learning things we never wanted to learn. 9 days of one baby locked inside a hospital and one toddler left at home. Days of not being able to dress them. Days of not being able to spend time alone with them.
I found it hard to see new babies arrive there, knowing that must have been what happened to our baby, while I was still under. I found it even harder to watch those babies leave before ours. I felt so frustrated when people would innocently say ‘how was your weekend?’ Others would comment ‘this is what being a Mum of 2 is like.’ No it’s not. It was 2021, still very much pandemic times, still strict pandemic rules. One baby locked inside a hospital. One baby not allowed through the hospital doors. In that situation, how do you parent both children? There were lots of other well meaning comments like ‘at least your baby will be coming home at some point’ and then once home ‘at least they’re okay now’. And he is. We are so incredibly lucky and thankful to have a healthy baby at home. But you take the memories home with you.
Life after NICU
We’re some of the luckiest ones. Our son doesn’t have any health conditions as a result of his prematurity, birth or special care. He is incredibly fortunate. But that didn’t stop the night feeds filled with flashbacks or the sadness for the things we’d missed out on. There were trivial things: no last bump photo; no baby shower; no last opportunity to wear that maternity dress; no countdown to a due date; no preparation for our older child. Yet every year of birthdays and then due dates are a reminder of that time in our lives. I still carry anxiety and worry, not necessarily about our child, but the world. Being a NICU parent opens your eyes to a whole difficult word. You become part of a club that doesn’t ever leave you. Through therapy I have stopped constantly imagining the worst case scenario but it’s definitely a daily battle. I have my own unrelated health issues and I still hate going to the hospital. Yet we are so lucky. So lucky that we were in hospital. So lucky to have an NHS that saved both of our lives. So lucky that NICU was an option. So lucky that was didn’t have a hefty bill to take home too. So lucky to be a family of 4, at home, safely together.
I’ve since been asked to feedback to the hospital. We met some INCREDIBLE staff while at our hospital. They do a difficult job, in difficult conditions with very little job perks. There were a small number of rules and errors that made our time all the more traumatic. Throughout his stay there were errors made when weighing him, meaning we were to stay longer to prove he was gaining weight he hadn’t actually lost. He wasn’t our first baby yet we were expected to prove we knew how to bath him or respond to his tears before going home, almost as if our NICU stay was somehow our fault. This made me feel all the more triggered by other families carrying their car seat home. You often don’t know until the day it is happening that your baby will be ‘allowed home’ so you never know when it’s going to be your turn to leave.
I lost people I was close to. Not those who didn’t get it, those who didn’t even try to. But I gained things, an understanding of friends who had been there only a year before me, reconnecting with friends from university who just ‘got it’, support from families I’d taught previously. I didn’t understand it when it was their turn. And in some ways, I never will. We’ll never understand the footsteps of someone’s path we haven’t walked. But we can try.
1 in 7 babies born in the UK are admitted to a neonatal unit each year (https://www.bliss.org.uk/research-campaigns/neonatal-care-statistics/statistics-about-neonatal-care)
So maybe it’s not your baby, or your best friend, or your cousin. But it could be your sister or your neighbour or your colleague. By sharing our stories we spread awareness and understanding and compassion. All things that made a very difficult road, slightly less bumpy.
Watch our video from World Prematurity Day 2021. https://www.instagram.com/reel/CWYYqspgOUW/?utm_source=ig_web_copy_link