It’s hard to believe that it was almost 13 years ago that my NICU journey started, it really doesn’t seem that long ago! I honestly think the time you spend on the unit stays with you, the nurses and Dr’s become friends or, almost like family and the gratitude and respect you have for them never goes away.
In April 2006, I went into labour very prematurely, I was 23 weeks and 1 day. I was expecting twins and had been having some problems for several days before labour started.
My Dr advised I had twin to twin syndrome (TTS) and my babies were sharing a placenta, for this reason I had been having scans every 2 weeks although I don’t think this is the reason for my premature delivery – there were no signs of TTS on delivery.
I’d had some bleeding a few days before the boys were born and the hospital had decided to keep me in for monitoring (I hadn’t been able to pass urine properly for several days and they decided to monitor my urine output). I am so grateful now when I look back because if they hadn’t made the decision to keep me in hospital, I wouldn’t have either of my boys now.
The night I went into labour remains, to this day, one of the most terrifying experiences I have had in my life, the guilt I felt for not being able to carry my babies to full term and the feeling of terror that they may not survive is something I would never wish on anyone. I had tried so hard to take care of myself and my boys throughout my pregnancy, following all the rules, I couldn’t understand what I had done that was so wrong. I have realised as time passes that it’s not something that I did, it was one of those things and that I am not the only person in the world who has gone through this.
So, on the 27th April 2006 at 1.37 and 1.44 am my boys arrived! My first twin, Charlie, was very eager to come into the world – he even let out a squeak much to the surprise of everyone in the room! Jack, my second twin, however, was not so keen! He had a much more difficult birth and it seemed like hours as they were trying to intubate him. Charlie had been shown to me and whisked away to the unit as I was still in labour. I remember thinking at the time just how tiny he was, I was crying and it was extremely emotional.
I was very lucky to have Dr Clarke as our neonatal consultant on the night of my delivery, he is truly one of the most amazing Dr’s I have ever met and I have such a great respect for him, even to this day we keep in touch and I have recently helped him with presentations on the delivery room cuddle which brings me to the story about my beautiful boy Jack.
As I said, Jack had a more difficult birth but eventually he was stabilised and Dr Clarke asked me if I would like a cuddle with him before they took him to the unit, I don’t know how but I knew instinctively that this wouldn’t be something I’d get to do again for some time and I jumped at the chance – what mum wouldn’t?
Holding Jack in my arms was one of the most amazing moments of my life, he was so tiny but so beautiful and my heart was bursting with pride that this tiny little man was mine, I loved him instantly and I yearned to keep him and his brother safe – if I could have swapped places with them, fight their fight for them, I’d have done it in a heartbeat.
Heartbreakingly, we lost Jack after only 11 days of life, he had an infection and was just too tiny to fight it, the only other time I got to hold my baby boy was as he died in my arms. I have never felt pain like the pain of losing my child, they say time heals but it still hurts as much today as it did the day I lost him, you just learn to carry on one day at a time.
My eldest twin Charlie is now almost 13 years old! He literally fought every problem he was faced with, with a strength and determination that contradicted his tiny size. That strength and determination is still there to this day, it normally shows itself every time I ask him to do something he doesn’t want to do!
His NICU journey was a long and worrying time, I remember once someone described it as a roller coaster ride, there will be lots of ups and downs, highs and lows – and how true this is! The lows – worrying yourself sick every time something goes wrong, wondering if things will ever get better. The highs of when they go right, and your baby shows a strength that is truly unbelievable. The hope and belief that one day you may actually get to take them home.
We nearly lost Charlie more than once, he had NEC and at one point was given 12 hours to live, thankfully that tiny scrap fought hard and proved everyone wrong.
It was almost 5 months before our day to leave came, I had lived at the hospital, rarely left his side and learnt things about caring for a premature baby that until then, I never knew existed. The time finally arrived to take my boy home, but this meant leaving the safety of the hospital, the friends I had made on the unit and most of all the security of having the nurses and Dr’s there 24/7 – I’d longed to take Charlie home but when it came to it, the thought terrified me. Nevertheless, we soon found our own routine at home, overcame the challenges we faced and learnt to survive without the help I’d become so used to.
Charlie came home on oxygen, it was almost 2 years before he was ready to come off, he was on 4 hourly drugs and 2 hourly feeds so the first few weeks were an absolute whirlwind until one day things just clicked and I found I was doing everything I needed to do without panicking and it became our ‘normal’.
When you spend so much time in hospital with so much support and at times, not even being able to touch your baby, feed them or even change them, it can be difficult to feel like they are yours. I know I felt detached and almost redundant because I couldn’t even do the most basic motherly task for my child in the early days on NICU. Once we were home, I finally started to feel like a ‘real’ mum.
It’s been a long road to get to where we are today, Charlie now attends a special needs school following a complete disaster with mainstream high school. He attended mainstream primary with little problem, always behind but coping day to day, high school however, was just too much of a challenge for him.
I have always said that he should never have started school when he did, he wasn’t ready and started with a disadvantage to all the other children starting at the same time. He got further and further behind over the years, the gap grew and with funding cuts and not enough support mainstream high school ended in complete failure.
I’ve had to fight for any support he’s needed over the years, you become someone stronger than you can ever imagined you’d be when it comes to fighting for your child’s needs.
Fast forward to today, the school he attends now is fantastic, they are doing everything they can to support Charlie’s needs and although it’s taken time to settle I have every confidence he is going to get the support he needs and they have his very best interests in mind.
Charlie was diagnosed with complex neurological development needs several years ago, part of his brain hasn’t developed as quickly as it should have, whether it ever will is yet to be seen. He looks completely normal, he has hit puberty early, caught up in size and weight but can be very young in some areas. Some days are harder than others but, he is my best friend, my sidekick and soul mate.
Since his dad left when he was aged 1, we have developed an unbreakable bond, we go everywhere together and find adventure in everything we do. He is a proper little character and I wouldn’t change him for the world!
I will continue to help Dr Clarke in any way I can, I truly believe the Delivery Room Cuddle is so important, whether it’s a full term baby, or a tiny 23 weeker, all mums need to feel their child in their arms and establish that initial bond with their child from the moment they arrive. I am so grateful I had that opportunity with my Jack all those years ago.