Beau was delivered weighing just 1lb 1oz, the equivalent to only half a bag of sugar...

The Sick Children’s Trust’s Chestnut House became our home for just over two months from February 2013, when our son Beau was born 14 weeks premature at the Rosie Hospital in Cambridge. We had never heard of the charity before, until we found ourselves in need of their help. On 3rd February 2013, at 26 weeks pregnant I started experiencing bad chest pains. My partner, Darren and I were really worried as I was already on medication for my placenta and we had previously had a stillbirth. As you can imagine we were on edge anyway throughout the pregnancy, even without any symptoms. We went straight to A&E at Southend Hospital, our local hospital in Essex. When I got there doctors found that I had high blood pressure, a high level of protein in my urine and also that my hands and feet were beginning to swell. They took a blood test that showed I had pre-eclampsia and also that my placenta had stopped working which meant the baby was very underweight. We were in shock; before this I’d had no problems with the pregnancy. It was all quite unexpected and felt so surreal. I was immediately transferred from Southend Hospital to the Rosie Hospital in Cambridge, as we were told I should be treated in a level three hospital. I panicked; being told that I had to go to a higher level hospital really scared me and I knew from this point onwards that my condition was serious. Once I was transferred, doctors told me that I would have to have an emergency C-section. As you can imagine, we were terrified. It was so early for our baby to be born and we were really frightened about what was going to happen. Three days later, on the 6th February 2013, Beau was delivered weighing just 1lb 1oz, the equivalent to only half a bag of sugar. He was the second smallest baby to be born in The Rosie Hospital. We were completely overwhelmed; we were excited to meet our baby boy but we were also filled with worry for him. He was so small and was rushed off by the nurses straight away. As Beau was so premature and small he had to stay in hospital in the Neo-natal Intensive Care Unit (NICU) and we were told that we were unable to stay on this ward with him. We live in Southend, Essex which is almost 70 miles from the hospital. The thought of being this far away from Beau was just unimaginable. Beau’s doctors told us that his condition could change at any moment and they had to take it hour by hour. The thought of something happening to Beau and us not being with him was so upsetting, we just couldn’t leave, and we would have slept on the hospital floor if we had to. So when a nurse told us about the ‘Home from Home’ accommodation The Sick Children’s Trust provides, we felt a weight being lifted off our shoulders. Alan, the house manager of Chestnut House, the charity’s ‘Home from Home’ at the Rosie Hospital, came up to Beau’s ward and met us. He told us that he could offer us a room, which would be free of charge for the whole of our stay, and led us straight to the house. It was brilliant; it was just below the NICU so whenever we went back to the house we were only a lift ride away from Beau. If we hadn’t had the house, we would have had to pay for a hotel or pay travel expenses back and forth from home, which we wouldn’t have been able to afford on top of the everyday payments we had to keep up with at home. If anything had happened to Beau during the night, it would have been awful having to travel to the hospital from home. Being able to stay in the house also gave peace of mind to our family; they knew that we were staying somewhere safe with a support network around us. It was lovely for them too, that when they came to visit Beau they could come and see where we were staying and have a cup of tea and a chat with us in a quiet environment away from the chaotic ward. Beau spent a total of four months in hospital and overcame many complications. Three of these months Beau spent in the Rosie Hospital before being transferred to Southend Hospital. During this time he suffered chronic lung disease and his left lung collapsed which led to him needing a ventilator for 35 days. He went through three lumbar punctures, 14 blood transfusions and was diagnosed with septicaemia. He also had a loss of blood flow to his left hand causing it to turn black. For a time we thought that he may lose his hand as a result, which was really traumatic for us as we knew it would be life changing for Beau. Fortunately doctors were able to save his hand, but he did lose two of his fingertips which although really upsetting was a lot better than what might have happened. He went through all of this and it seemed to be just one thing after another; it was difficult for us to watch him in such distress and so poorly, especially as he was really tiny. Aside from all the other complications, Beau also spent six weeks on continuous positive-air-pressure (CPAP), which used mild air pressure to keep his airway open. Doctors also discovered that he was suffering from Patent Ductus Arteriosus (PDA), a heart condition which occurs when the Ductus Arteriosus, the foetal blood vessel, fails to close after birth. As this remains open, there is an irregular blood transmission between the arteries in the heart. However, Beau’s duct closed itself in the end without treatment, which was great as we really didn’t want him to have to go through heart surgery as well as everything else; we didn’t know how much more he could handle. While in hospital Beau also took part in two research programs, one checking his brain for a week and the other measuring his blood sugar levels through a transmitter in his leg. The three months Beau was in the Rosie Hospital were heart breaking; every day presented a new challenge and we were so scared for him. It seemed like every time we started to relax, thinking Beau was one step closer to recovery, something else got in the way and a new diagnosis or treatment was necessary. Needless to say, in these circumstances Chestnut House became our sanctuary. It was such a positive place to be and after a really stressful day on the ward, walking through the house doors gave us a great sense of relief. Even the décor was relaxing; I could just go in to my bedroom, shut the door and let go in the quiet of my room. I had a direct line from the ward straight to my bedroom, so if anything was to happen to Beau when we weren’t there, we could be notified quickly and be with him in less than five minutes. There was also a lounge with a television which was a great distraction, and laundry facilities. Looking back now, I wonder how doing the laundry or watching TV could become so important, but while Beau was in hospital it was these things that kept me going. Doing the washing, cooking a home-made meal and watching a bit of TV gave Darren and I a sense of normality. Our world was turned upside down and continued to feel that way for the many weeks Beau was in hospital. Being able to carry out everyday tasks helped us to keep going. Sitting in the lounge or around the dining table in the house provided a great opportunity to talk to other families. Friends and family can only try to understand what you are going through, but the other families in the house just knew. It was like our own bubble; only we could understand what each other felt - the feeling of utter helplessness. Also hearing other people’s stories helped because the chances were we had experienced the same thing ourselves so we could pass on advice. Or perhaps you were going to experience something similar in the future, so it was good to know what to expect. Aside from the wonderful support we received from other families in the house, the staff in the house were fantastic. Alan was a God send and words cannot express how much he helped us during our time at the Rosie Hospital. He truly has a gift for reading people and situations; he was always there for us and always knew what to say, but he would also recognise when we wanted to be alone and didn’t want to talk. He ran the house beautifully and his caring and helpful attitude made us feel so at home. After spending a further month in Southend Hospital, finally on the 3rd June we were able to bring Beau home and we were thrilled. He is still on oxygen but is home with us, which is the most important thing. Beau wasn’t actually due until 16th May, so we are very lucky to have him home with us now. He has been through so much early on in his life but he has been so strong. I could be by Beau’s side every day because of The Sick Children’s Trust and Darren believes that this is why Beau came through his illness. I was able to bond with him and his doctors used to say that he reacted to my voice and touch in a positive way. For this I know I will never be able to thank the charity enough. If it wasn’t for The Sick Children’s Trust and the house staff, I am not sure how we would have got through this situation. We faced our worst nightmare and we will never forget the support and love shown by Alan and his team. Beau is now doing well and we hope to go back to Chestnut House soon and visit all the staff. Emma Avery, Beau’s Mum