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Simon's story

21 October 2016

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.

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.

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.

Since then he’s gone from strength to strength. He came off oxygen in April, and began to pile on weight.

As things began to settle down, I decided I wanted to do something to support Bliss’ work. I entered (and completed!) the Royal Parks Half Marathon, and I successfully nominated Bliss, with the support of my colleagues, to receive a donation from an auction organised at work.



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.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

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.

Share your experience on our map to raise awareness of World Prematurity Day 2016. Click here to add your story now.

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