Inspired by baby Ben - Simon's story

Like most expectant parents, my wife Vicky and I were eagerly awaiting the arrival of our son Ben. Vicky’s pregnancy had been straightforward, so when Ben was born at 26 weeks and weighing 1lb 13oz it was a huge shock to the family.

I felt so helpless in those first moments. I was scared to see him and I was afraid he wouldn’t survive. I was allowed to touch him briefly for the first time, before he was put in an incubator and taken to the neonatal intensive care unit (NICU). He looked so tiny and vulnerable.

Suddenly, Vicky and I were on our own but without our baby. It was surreal. Everything went so quickly and it was difficult to comprehend that we were now parents.

Later that afternoon, Ben was transferred to the NICU at Luton and Dunstable Hospital for more intensive care as he had suffered a serious brain haemorrhage. We were told the impact of the bleed would not be known 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 focus on the positive things

For the first week, we stayed in a small room next to the NICU. After that we moved back home and ‘commuted’ to the hospital every day. No matter how long we stayed with Ben we always felt incredibly guilty whenever we weren’t there.

During his stay at Luton, Ben suffered from chronic lung disease, jaundice and required nine blood transfusions. He also needed surgery for patent ductus arteriosus (PDA), a common heart condition in babies in which a duct just outside the heart does not close as expected in the first few days of life.

I was amazed by the care Ben received and the staff were so supportive. Not just in taking care of Ben, but also getting us 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 employer was incredibly supportive though, allowing me to work from home a lot. It was physically and emotionally draining, but we got ourselves into a routine.

It was a tough time for Vicky too. She was so focused on Ben that it was easy to forget what she’d been through herself. She was amazing throughout and it’s a great comfort to know that Ben was, and is, being looked after by such a great mum.

As his condition improved, Ben was transferred back to the high dependency unit in Stevenage where he was born.

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 few nights and then, after 12 weeks in hospital we were able to take him home.

As things began to settle down, I decided I wanted to do something to support Bliss. I entered (and completed!) the Royal Parks Half Marathon, and I successfully nominated Bliss to receive a donation from an auction of new polymer £5 notes organised at work.

Ben has some issues using his left hand side as a result of the brain haemorrhage, and has regular sessions with a physiotherapist. But 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 view our online support pages.

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 [email protected].