Why Prematurity is like The Matrix: A post for World Prematurity Day

Do you want to know what it is? Prematurity, I mean.

This blog is, in large part, my attempt to tell you just that. And this week, the week that will conclude with World Prematurity Day on November 17th, I want to do that more than ever. I want to tell you what prematurity is.

I don’t mean technically. You probably know that prematurity is clinically defined as birth before 37 weeks gestation. You may also know that 15 million children are born too soon every year, 60,000 of which are born in the UK alone. But parents of premature babies (though, in my experience, they frequently cling to statistics) know that facts and figures don’t mean all that much when it’s your child who has been delivered in a pre-term birth. If you are quoted an 80-90 per cent survival rate for your child (as we were) and, unimaginably, they are one of the 10-20 per cent who die, or if you are given a 70-80 per cent chance that your child would outgrow their prematurity (as we were) and they don’t (as Boo can’t), well let’s just say that statistics don’t mean a thing.

They are not prematurity.

Prematurity is despair that runs so deep that you feel you can plunge no further. Prematurity is hope that makes you fly so high that you can barely breathe with the excitement it generates. Prematurity is pain and joy. It is death and it is life. It brings into focus what it’s all about. What really matters. And once you have experienced this, nothing will ever be the same again.

You see, prematutiry is like The Matrix. I never thought I would be the one this happened to. And there are moments – who am I kidding, I mean days – when I wish Morpheus would enter my life with his funky shades and offer me a blue pill so that I could forget about it all. So that I could go back to my happy, pre-NICU existence, where I just got on with the job of looking after my kids and going to work and socialising.

This life tastes bad sometimes. There have been days that have felt stiflingly grey, when I have longed to breathe fresh air and taste the pleasures of my former life. Days when I have been scared out of my wits by things I hadn’t ever known about before: about long lines and lumbar punctures; about brain bleeds and cerebral palsy. I rather liked the normal world that was pulled over my eyes for the first 35 years of my existence. But of course, I had no idea how bloody lucky I was at the time.

I can’t go back. This is my new reality, a reality that is structured as much by prematurity as it is by the passing of the seasons and the days of the week. It is everywhere in my family’s life, even though we left the NICU well over a year ago.

But this is only part of our story. This is only part of what prematurity is. Because prematurity is also jaw-droppingly revelatory. It opens your eyes to a world that was always there, but (in my case) you never really knew existed. And it’s a challenging world, to be sure. It’s a difficult world. Yet it is also an astonishingly beautiful place in which the truth about life, about why it is so very precious, is revealed. How could you ever appreciate a finely cooked steak if you haven’t tried to digest the indigestible? Ignorance is not bliss. It’s only when everything you hold dear is on the line that can you appreciate it. I mean really appreciate it.

There is no blue pill for me. But if I were offered it, I wouldn’t take it even if I would give my soul for my son not to have cerebral palsy.

You see, prematurity is the scales falling from your eyes. It’s seeing what makes the world turn on its axis. And once you’ve had a glimpse of this reality and seen it for what it is, you see everything differently and you bat away all the trivial stuff that preoccupied you before the NICU like a fly to the swat.

Because none of that is real in the same way. I can see that now.

Prematurity affects the lives of millions of families across the world every year. On World Prematurity Day, please consider giving a donation, or volunteering some of your time, to one of the leading charities (such as Bliss, Tommy’s or Bounty) that fund research into pre-term birth or who offer invaluable support and care for families affected by this life-changing event.

Thank you.

18 thoughts on “Why Prematurity is like The Matrix: A post for World Prematurity Day

  1. Jennifer

    Great post. It is perfect for World Prematurity Day. You are a very strong mommy! I have been following your posts for quite sometime now. My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called “From Hope To Joy” about my life-threatening
 pregnancy and my daughter’s 4 months in the NICU (with my 3 young sons at 
home), which is now available on both the Amazon and Barns&Noble websites. It was quite a roller 
coaster that I am certain some of you have been on or are currently riding on. My mission is to provide hope to women struggling with
 high-risk pregnancies, encourage expectant mothers to educate themselves before 
electing cesarean deliveries, provide families of premature babies a realistic 
look at what lies ahead in their NICU journey, and show that miracles can 
happen, and hope can turn into joy.
 Please see my website http://www.micropreemie.net and http://www.facebook.com/jenniferdegl
Thank you.

  2. Wicked World of Lucas

    Such an honest and brilliant post. I admire the parents of all prem babies. Both my mum’s godsons were born prematurely over 20 years ago; 7 & 9 weeks respectively. I can remember my mum sat on the stairs one evening talking to their mum who had called from the hospital to say they had just had the chaplain come and christen the 9 week prem baby as they didn’t think he would last the night. I then remember my mum coming off the phone and crying on my dad’s shoulder as she felt so helpless. Thankfully both boys are in their 20’s and thrived during their childhood. We always raise money for the local special baby care unit when we can – they do an amazing job and are true angels. Great post and if I can ever help with promoting anything to do with premature babies, please let me know. #pocolo

    1. mrboosmum Post author

      Your comment has made my day. I think you’re so right that prematurity touches lives beyond immediate family and it’s so lovely to hear about how you have supported your local unit. Thanks again!

  3. sarahmo3w

    What a beautiful and moving post. I don’t know much about prematurity, having never experienced it, but that has certainly helped raise my awareness.

  4. Pinkoddy

    What a beautiful post. I can really relate to the appreciating thing more, it’s little things like our 4 1/2 year old putting on his own socks – it’s like a miracle and something at some point we thought he’d never be able to do. Thank you for sharing so honestly.

    1. mrboosmum Post author

      Thank you so much. I don’t know that I have changed that much as a person, but like you, I see things very differently now. Boo has just discovered taking his socks off :-).

  5. Katherine Kowalski (@MissMavisCruet)

    A wonderful post. My son wasn’t prem but your description of what prematurity is, and how it changes your life, resonated with me so much. My youngest has complex disabilities and health issues, with no diagnosis and no prognosis. It really is like living in the matrix. Scary, terrifying at times, but my eyes have been well and truly opened and it is as beautiful as it is difficult xx

  6. Nana most grateful

    We too entered the alien world of NICU with our 25 week micro preemie grandson almost 3 years ago. It was like you were rendered helpless as you scrubbed your hands red raw only able to watch the machines doing the work and hear the dreaded bleeps of the sats dropping and the neverending rounds of blood tests and the cpap then the hi flow then the lo flow and then horrifically back to cpap. The weight loss of an already tiny scrap of humanity, the weight gain making us all cheer; The infections, the blood transfusions, the horrible horrible but necessary eye examinations. All these things I’d never heard of but quickly began to include in my normal conversations. We were extremely lucky and are enormously grateful to our NICU for our healthy grandson. Every time I run my fingers over his many many scars on his hands and feet from all the blood tests, I remember his time in limbo, in the incubator, when we wondered if he would live. We now fundraise to support all the new parents and babies who have this to face in the future. .

  7. christaterry

    See, this is part of why I wish more moms to be were told about prematurity during pre-natal appointments. Yes, the statistics say it probably won’t happen to any given mom, but it’s going to happen to some mom so why not talk about it so that one mom in eight or ten (whichever it is now) isn’t SO scared.

  8. Pingback: The little Things | faithgift

  9. Mummy Wife Woman

    a beautifully written post that tore on every heart string. youve managed to sum it up in a way i couldnt possibly manage. somethings never get any easier to talk about even after all this time but today is when we need to remember, we need to talk about it to raise awareness and help make other people understand what it means to bring a premmie into the world. Youre a truely inspirational amazing Mum xx

  10. Susanne Remic

    Beautiful post. You are an inspirational mummy to a brave little boy and your blog is wonderful. I know I found it informative and comforting to read when we were faced with the threat of premature delivery. Comforting in knowing that I would not be alone and that others are there to support. Thank you x x x


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