As the mother of 3 children who ALL decided to arrive at gone 41 weeks, I find the idea of a baby being born at 24 weeks is almost impossible to get your head round.

Most lists are written as a retrospective on a situation, but this special one by Sarah Kirker was written when she was right in the thick of it, which makes uniquely raw and vulnerable. For me it is particularly pertinent because I too was a preemie, born at 33 weeks, 36 years ago.

I wrote this when my baby was 3 weeks old. I should have been 27 weeks pregnant. My thoughts were so tangled and I started to find that every mum in the neonatal unit felt the same. Now he’s 10 weeks old, I should have been 35 weeks pregnant. I wish someone had told me that how I was feeling wasn’t ‘wrong’.

  • 84 days to due date. The start of the 3rd trimester, and yet Matthew is 24 days old.

  • It’s been a relief to talk to other mums who have said they feel they are grieving their pregnancy while their baby lies in front of them. I can’t even begin imagine what it feels like to grieve a baby.

  • I lay on the ward after Matthew was born, Jason sleeping in the chair beside me. I couldn’t look down. I felt like my body had failed my baby. I didn’t know if he was going to survive the day. My body allowed infection to brew all around him in my amniotic fluid to the point that his kicks had slowed.

  • I thought about how other women talk about their births and I was looking forward to being that strong, feeling that emotion when my baby would be laid my chest. Instead my baby was a third of the size of most others and I didn’t even get to touch him for 4 hours and when I did, it was his hand, through a hole in a plastic box and then I was whisked away to the ward, away from my baby.

  • I wanted my husband to be proud of me and in love with our son, not scared for us both.

  • I thought of our families reactions when we would have told them the baby had arrived and was healthy and that I was doing well. Instead they were up all night fearful and praying, I was septic and my baby was in NICU.

  • I thought about how I’d tried so hard to stay fit and healthy for my baby by sticking at the gym. My body failed him anyway.

  • I thought of the birth that was supposed to be over 15 weeks away and how I hadn’t even made it to the Getting Ready for Baby session to discuss what happens when you go in to labour. I learned as it happened.

  • I felt betrayal. The placenta that I relied on to nourish him was potentially poisoning him.

  • My first photo with him after birth, I’m not even holding him. I was in a wheelchair and he was in an incubator.

  • I thought about all the people I hadn’t yet told that I was pregnant. My body stole that excitement.

  • I lay thought about how shocked the girls in work would be. I was expecting to need a maternity tunic and get to say goodbye to all my patients and colleagues. My body took that away.

  • I thought of the summer I had imagined spending with my baby, pushing his pram up the coast. I didn’t know if he’d be discharged by then let alone still alive. My body ruined my hopes.

  • I heard babies in other rooms crying but my room was silent.

  • When I was discharged, it felt like I was being torn away from him. I walked out of the doors of the hospital and cried like my heart was breaking in to a million pieces.

  • I’ve felt jealousy watching babies who are a couple of hours old leave the hospital in car seats with their parents… Then guilt that I’m so selfish.

  • I get a meal voucher with a cute little giraffe and my name, entitling me to a free meal in the canteen. I want to pay. I don’t want to be the mum of a premature baby. I want a healthy baby and I want this to be over.

  • I see the photos for World Prematurity Day. My baby was meant to arrive 18th July, not 1st April. I don’t want to be marking World Prematurity Day because I wanted my baby to arrive in July.

  • Tiny Life have been incredible, but I want to be someone who donates to them, not someone who needs them.

  • We watched the intensity of the medical team as a baby was moved in from the delivery suite. We couldn’t believe all this had been done for our baby while I lay one floor down.

  • I desperately wanted to be in the delivery suite to tell that mum that her baby was still breathing and the NICU team are working hard. Not the 4 lonely, frightening hours we had.

  • My life revolves around expressing milk. If I try to take a few hours away from home or hospital, I have to be prepared to pump within 3 hours.

  • No baby to latch on, yet I’m stuck to my pump for 20-30 mins 8 times a day. No baby, no emotional incentive to produce milk when I’m away from him. It drags in.

  • When we’re having a good day, I feel guilty when the parents of more unwell babies ask how he is.

  • I take on the fear and distress of the parents around me.

  • I want my step son to look forward to coming to our house to see and hold his new little brother instead of feeling like we’re clearing off for another few ours to prioritise his brother.

  • I want to be preparing our house for Matthew arriving, instead Jason and I sit beside his incubator every day and when we get home we sleep off the emotional exhaustion.

  • I struggle to think of a distant future beyond now. The thought of the anxiety of another pregnancy terrifies me, let alone another premature labour, and yet I desperately want Matthew to have siblings.

  • Discharge likely won’t mean we see the back of the hospital. We’ll be back frequently for appointments.

  • I’ll be back to work in January instead of April despite 3 months of someone else caring for my baby, emotional distress that would have anyone else off sick and up at all hours to keep a milk supply going that wasn’t supposed to come in for 3 months. That exhaustion on top of the travelling to see him. Surely that’s not maternity leave?

  • Research by Bliss shows that no country in the UK is meeting the national standards for psychological support for parents of premature babies.

  • In Northern Ireland, where I am, only 2 of 5 neonatal units have any mental health support, including the regional NICU.

  • There are brilliant parents of premature babies groups groups on Facebook to ask questions and discuss fears.

  • Talk to the other parents. My best opportunity is when the mum’s are queuing to sterilise breast pump equipment.

  • Some won’t be ready to talk. I now know that I’ve taken the place of those who helped me when we just joined the ‘Premie Parents’.

  • Looking back, now at 10 weeks old, I know all of these feelings are ‘normal’, but I need to understand them and find some control of them before they take over- preemie mum’s are 40% more likely to suffer PND.

  • Flashbacks are common. Premature birth is a trauma. Smallest things found that 44% suffer flashbacks. 61% experience guilt. A third feel isolated. So many preemie mums know exactly what you’re going through.

  • Next year, we won’t be sitting beside that incubator. It will be someone else’s heartbreak and I want them to know they’re not alone.

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  • Reply Caroline October 2, 2018 at 12:15 pm

    A beautiful post, my daughter was born at 25 weeks & 3 days through unexplained labour. She’s now 10 and brilliant, she’s dyspraxic but other than that she’s fine. We were lucky and she now has three little sister all born at term. You never forgot . X

  • Reply Deborah Morgan October 2, 2018 at 4:09 pm

    Dear clemmie, if you need a perinatal psychotherapist, please contact me on 07484121827.Deborah.

  • Reply Melissa October 2, 2018 at 6:08 pm

    Sending love and best wishes!
    Nicu! simply the hardest thing I’ve ever had to do. We were only there for 3 weeks but it was so so tough! I found one of the hardest things was watching people leave before you, sometimes they may have arrived after you and they’d still get to go home first! I was so envious…happy for them but always wishing we were taking our twins home!
    Wishing your beautiful baby a speedy recovery. Thank you for writing this exactly as it is x

  • Reply Emma October 3, 2018 at 2:02 pm

    Wow. Incredible. The most accurate account of being a premie mum I’ve ever read. Still 6 years on I can recount most events and go back to those feelings; guilt, envy, hopelessness, despair, worry….
    The lack of professional emotional support except for the odd hug and words from a nicu nurse.
    All the best to you and your baby. X

  • Reply wildthymeout October 3, 2018 at 9:25 pm

    Thank you for sharing this. I was a mum of 27 week old twins 10 years ago, although it feels like last year. The feeling of being robbed of so many things has never left me, and that my husband experienced pure terror instead of joy when they were born has wreaked havoc on our family relationships. There was never any mental or emotional support. Family not knowing how to react- whether to celebrate our arrivals or not, your babies becoming spectacles because your visitors have never seen a baby that small. It’s a lonely and alienating experience. Once we were out of it I dealt with it by reaching out to any parent I knew or heard of going through a similar experience- it helped to know our trauma could help another family feel less alone. Big love.

  • Reply dahliadajani October 7, 2018 at 8:16 am

    So accurate- I too am a mum of premie twin girls at 23+2 days. One lost her fight and the other is a fighter. 10 years on its still raw… I still wake up from nightmares around their birthday day. But… the experience has taught me so so much and I feel so much stronger. Our Lulu has her challenges but she is amazing and happy. It’s so important to talk and to try step by step to turn this difficult time into one that inspires you to do something amazing… x

  • Reply Kathy October 7, 2018 at 9:48 am

    Wow what a powerful list! My brother and his girlfriend are currently in hospital as her waters have broken at 29 weeks. So helpful to have some insight into how they might be feeling. I wonder if anyone has any suggestions for how we can best support them? What help might they need/ want?

  • Reply nicoladonnelly October 7, 2018 at 3:09 pm

    Have had all hear feelings and understand them so well. My son was born at 25 weeks. My advice to NICU mums, don’t feel bad about being angry and look after yourself – you are spending long hours at hospital and expressing. You need to eat well, rest and keep hydrated.

  • Reply Angela October 10, 2018 at 10:22 am

    As a mum to a 23+5 weeks boy and 3 years later a 26+5 weeks girl I found this so moving. My son is now 9 and my daughter is 6 but the pain and guilt is still incredibly raw. I now regret not having the counselling I was offered as even 9 years later I still feel emotionally scarred from the experience but at the time I just felt like I needed to push through it all and not crumble.
    Both my children have issues because of their prematurity but are amazing and strong children considering what they have been through.

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