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Simon's story

21 October 2016

Simon Scorer works for the Bank of England and last year he nominated Bliss to benefit from an auction of new polymer £5 notes which resulted in a donation of £64,000 towards our work. Here, Simon explains how his son’s neonatal journey inspired this generous support in a story published in our free magazine for families, Little Bliss.

Like most expectant parents, we were looking forward excitedly to Benjamin’s arrival – getting his nursery ready, and thinking about all the things we’d need. Then everything was turned upside down.

In November 2015, Ben was born suddenly at just 26 weeks. Vicky’s pregnancy had been uneventful, so his arrival came as a huge shock. He weighed only 1lb 13oz and was immediately ventilated.

Simon holding Ben in the neonatal unit on the day he was born

I felt so helpless in those first moments. I was scared to go over and see him – I was afraid he wouldn’t survive and didn’t want to get in the way of all the people working on him. After a few minutes they said I could come over, and I was allowed to touch him, very briefly, for the first time. Then he was put in an incubator and taken out to the intensive care unit – he looked so tiny and vulnerable.

Suddenly, the room that had been a hive of activity was empty. Vicky and I were on our own, without a baby – it was surreal. Everything went so quickly, it was difficult to comprehend what had happened and that we were now parents.

Later that afternoon Ben was transferred to the Neonatal Intensive Care Unit (NICU) at the Luton and Dunstable Hospital. We soon learned he’d suffered a serious brain haemorrhage, and that the impact may not become apparent for months or even years. This was devastating news, and it was difficult not to think about all the challenges it may bring down the road, but we tried to stay positive and not focus on it too much.

We were lucky to be allowed to stay in a small room next to the NICU for the first week. After that we moved back home and ‘commuted’ the 30 minute drive to the hospital every day. Leaving Ben was so difficult – no matter how long we stayed with him we always felt incredibly guilty whenever we weren’t there.

Ben had a fairly ‘stormy’ time in Luton – as our discharge summary described it! He suffered from chronic lung disease and jaundice and required nine blood transfusions. One night we were woken by a phone call asking that we come in as soon as possible because he’d had a setback following an infection. He also had a heart condition (a PDA) which involved a transfer to St Thomas’s Hospital just before Christmas for surgery.

I was amazed by the treatment and care that Ben received, both during his birth, and in the subsequent days, weeks and months. It’s such a hard job, with 12+ hour shifts, but everyone on the units was so supportive. Not just in taking care of Ben, but also getting us parents involved and paying attention to how we were coping.

We found the material Bliss produces for parents to be an invaluable help - not only did it help us to understand and process all the things that were happening to Ben, but it helped us explain things to Ben’s grandparents and other family members who were naturally keen to understand what was happening. Being able to refer to an approachable, reliable and comprehensive source of information was a huge help to me and Vicky.

Going back to work was tough. It was difficult to think about anything other than Ben, and to be so far away from him and Vicky. My work was incredibly supportive and flexible though, allowing me to work from home a lot. Whenever I was in the office, I would rush after work to spend the evening with Ben. It was physically and emotionally draining, but we soon got ourselves into a routine. Days blurred into one another – even most of Christmas Day was spent in NICU, with a short break for turkey!

It was obviously a tough time for both me and Vicky. She’d been discharged from hospital almost immediately, so she could travel with Ben in the ambulance to Luton. But she was so focused on Ben that it was easy to forget what she’d been through herself. She would spend pretty much all day, every day, sitting by Ben’s side, on her own much of the time. She’d always be there for the doctor’s morning rounds, listening intently to all the discussions about Ben’s numerous issues – when describing things later she was asked several times whether she was a medical professional herself! She was amazing throughout and it’s been a great comfort to me to know that Ben was, and still is, being looked after by such a great mum.

As his condition gradually improved, Ben was transferred back to the high dependency unit in Stevenage where he was born. He was eventually moved into a cot, but it always felt like one step forward and two back – the next morning he had another suspected infection and was back in intensive care! Then suddenly, or at least that’s how it felt, he was moved back and the nurses began talking about him coming home.

His nasogastric (NG) tube was removed and we were shown how to bottle feed him, how to use home oxygen tanks and tubes, how to bath him, and we had a lesson in resuscitating a baby. We roomed in for a couple of nights with Ben to make sure we could cope with everything and then in early February, after 12 weeks in hospital, and still a couple of weeks ahead of his due date, we were finally able to take him home.

Bringing Ben home was daunting at first. Especially since he was coming home on oxygen. Again the Bliss leaflet on home oxygen was very useful and we soon got used to it. It was great to finally have Ben home and to be able to do things as a family. There were points during his NICU journey we thought we might never be able to. Just simple things like a walk around the park with Ben in the pram meant to the world to us.

Some advice we were given at the time was that worrying doesn’t stop the bad things happening but it does stop you from enjoying the good. You just have to try and take each day as it comes and not look too far ahead, try enjoying the little moments and successes where you can – kangaroo cuddles, gaining weight, moving out of the incubator, coming off oxygen.

As soon as things began to settle down I decided I wanted to do something for Bliss. I completed the Royal Parks Half Marathon raising over £1,200 and I successfully nominated Bliss to receive a donation of £64,000 from an auction of new polymer £5 notes by the Bank of England.



Ben’s needed one more stay in hospital for surgery on an inguinal hernia. He has some issues using his left hand side as a result of the brain haemorrhage, and has regular sessions with a physiotherapist. But looking back, as Ben comes up to his first birthday, it’s amazing how far he’s come. He has grown into a very happy little boy and we couldn't be more proud.

The Bank of England held a very special banknote auction on 3 October 2016, featuring a select group of low and interesting numbers of the new Polymer £5 note. Proceeds were split between Bliss, The Myotubular Trust and The Lily Foundation. The auction raised £194,500 with over £64,000 coming to Bliss! To find out how your company can support Bliss with fundraising or a charity of the year partnership, please contact corporate@bliss.org.uk.

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