We arrived at the Royal London Children’s Hospital on 30th May 2011 with nowhere to stay.

We arrived at the Royal London Children’s Hospital on 30th May 2011 with nowhere to stay. Our son Freddie had been born on 29th May 2011 following his premature birth at 26 weeks at our local hospital in Huntingdon, Cambridgeshire. Freddie needed specialist care and that couldn’t be provided in Huntingdon so we’d just followed him to London without thinking that far ahead. One of the nurses on Neonatal Intensive Care Unit (NICU) gave us the details of a charity The Sick Children’s Trust and its Stevenson House which became our home for 19 days from the 31 May until 18 June 2011. Stevenson House was no more than a five minute walk from NICU, which meant that we could be close to Freddie at all times. We were so worried about him as due to his early arrival in this world he had to fight for life and had a number of health issues to overcome. Freddie was ventilated for long periods and it was extremely difficult as he was so ill. We could not financially afford to stay at a hotel for an unknown period of time. Commuting would have meant time away from Freddie which was not an option at this critical time. As much as we didn’t want to leave Freddie, we knew that in the long run we needed to recharge our batteries and recuperate ready to spend another very long and emotionally draining day by Freddie’s side, and Stevenson House provided us with this space. Freddie is our first child, so luckily we did not have to worry about other children and thanks to Stevenson House we could focus all our time and energy on him. Also, because the house was so close to the hospital it allowed us to be close to Freddie and spend as much time as possible with him. The doctors often advised us to take a break as at times we were spending too much time on the unit and were exhausted. Staying only five minutes away at Stevenson House meant this was easier and we didn’t feel like we were leaving Freddie. Having that space away from the wards meant so much to us, firstly because we it meant that my wife Carys could take time to express her breast milk in private and recover from a difficult and traumatic birth. As much as we did not want to eat anything, it was important to keep our strength up for Freddie. The kitchen at Stevenson House meant that we could pop back and make a quick bite to eat before rushing back to Freddie, without having to spend the time sitting in a restaurant. In addition, Carys had to eat well to enable enough healthy milk to be expressed to feed Freddie and get him strong enough to fight. Secondly we also found that being away from the wards at times was helpful as we had other families in the house that we could share experiences with and support each other. On other occasions it was important to be able to spend time by ourselves in the privacy of our own room, something that was respected by other families. We left Stevenson House on the 18th June when space became available for Freddie at Addenbrooke’s Hospital in Cambridgeshire, which was much closer to home. Freddie was transferred here and we were then able to stay at home and just come in to visit him daily. Freddie was in hospital for 14 weeks during which time he stayed at three different hospitals. When initially discharged, Freddie stopped breathing after five days and spent 16 nights in hospital being monitored before being discharged with home oxygen. He required this 24 hours a day. It has been a rollercoaster ride but Freddie is finally strong enough to not need any oxygen. We celebrated his first birthday last week and he is a happy little boy. He currently is seen by his Consultant once a month, but she is pleased with his progress. Freddie still has chronic lung disease but thanks to the oxygen his lungs are much stronger now and whilst we never know what the future holds, we are very positive that Freddie will continue to grow into a healthy boy. Without the kindness and support of those at The Sick Children’s Trust in the early days we do not know how we would have coped. We will always be indebted to the charity for allowing us to be there with Freddie as much as possible to support him in his fight for life and I can’t put into words how much that meant to me and my family. Andy, Freddie’s Dad.