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Blog Takeover - 1 in 100, Roman's Story

1 in 100, Roman's Story - by Carmen

Mum Blogger
Hi, I'm Carmen, Mum of Tallulah & Roman. I'm currently on maternity leave from my job in television & we live in Manchester (y'alright our kid).
I was delighted to be asked to take over the Tommy & Rex blog, but after reading the amazing collection of posts the previous mama's had put together, I'll admit I was a bit flummoxed as to what I could possibly offer up. As I started to think about what shaped me most as a mother, one stood at the a million miles. But it was something I'd not opened up about yet, something I'd buried deep inside, in a box with a huge padlock securing all of my feelings about it. As I thought further about the possibility of opening up about our experience, a statistic that'd strangely comforted me at the time reared it's head - 1 in 100 babies are born with a heart defect. You, someone you know, follow on social media, nod your head hello to at the shops each week, may've had a similar experience & I decided there & then that I was going to share our story. If one person feels less alone, more comforted, if the tiniest inkling of awareness is raised, then it was worth opening up the box.
Roman's birth was all planned, we were having a caesarean on 22nd October 2018 at 9am. I was over the moon - after a terrifying emergency c-section with Tallulah, the thought of a birth I had some level of control over felt like a dream come true. We were asked questions like 'what music would you like playing', 'would you like us to lift him straight up so you can have a few pictures before we get him set up on your chest for skin to skin' - there wouldn't be emergency buttons being pressed, consultants running & shouting, no shared looks of terror between Karl & I, this time it was going to be magical. And it was. We had the most amazing delivery, tears were shed, elated photos were taken, everything was a dream.
Mum Blogger
But maybe a minute or two after he'd been placed my chest, I could feel his breathing was laboured. As I looked down, I could see he was blue. Asking the doctors to take a look at him, I was soon reassured & off to the ward we went. He latched to the breast beautifully, but as I watched him try to feed I could see he wasn't able to breathe.
Roman was born at 9:54am, he was taken to intensive care at 7:43pm - I remember the time so vividly as I had to sign for my beautiful newborn baby to be taken away from me. Told I wasn't allowed to visit him until the morning after as I was still being monitored myself. I lay in that hospital bed, surrounded by mothers with their babies, listening to them feed & shhhh their new arrivals while I hand expressed colostrum with tears flooding my face & feeling as though the most precious gift had been snatched away, stolen from me.
Over the next 24 hours I sat by that fiberglass prison, unable to hold him, my hands in tiny holes stroking what bits of him I could get to between the wires, cannulas & tubes. Then the news came.....a doctor came over & told me to sit down, with an arm around my shoulder she continued to tell me it was bad news, Roman had numerous heart defects & would need to be operated on urgently in an attempt to save his life. We were emergency-transferred to a hospital in a completely different city, I later found out my caesarean wound had torn open during the journey but I was too full of fear for my baby boy to notice.
Mum Blogger
Roman had heart surgery at 8 days old. We were told it'd take around 4 hours, I kissed my tiny 6lb newborn goodbye on a huge metal operating table as I watched him be anethetised. Around 40 minutes later a nurse came in to the room where we were waiting, I was terrified, all of my fears must be true if she was back with news so soon. I felt faint as I prepared myself for the worst. But a smile spread across her face & she said 'He's all done!! Would you like you come to recovery & see him Mum"? As I raced through the intensive care suite the surgeon appeared, beaming, telling me how successful the surgery had been & how delighted he was with Roman. He'd need more, extensive surgery in the future but for now, he was alive, he was surviving, he was a fighter.
Mum Blogger
5 days later after recovering amazingly, we came home. Countless subsequent hospital visits, endless tests & scans, Roman continued to thrive & quite miraculously, his heart was repairing itself. The open heart surgery that was planned for when Roman turned six months has been postponed indefinitely with a huge likelihood of him never actually needing it. If you'd have told me in the dark days of standing over his incubator, watching him being kept alive by machines, that now, just 8 short months later he'd be the happiest, healthiest, most beautiful little boy, I wouldn't have believed you. But here we are, my little warrior & I.
So really, what I wanted to achieve by opening up & sharing Roman's story was to raise awareness for the 1 in 100 babies born with a congenital heart defect, to shout from the rooftops how amazing our NHS is for all of the little hearts it saves & also to help myself heal, thank you for letting me share our story - while the box of buried feelings has been opened, I think some of the hurt has been repaired too.

1 comment

  • Amazing , brave and open and honest
    What an amazing family you have ❤️


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