We were both really worried and stressed, everything seemed to be happening really fast and we were so far away from home...

It was at a time when we were both upset and exhausted, as we thought we might have to face the prospect of leaving our poorly baby,that we were made aware of The Sick Children’s Trust and Chestnut House. My husband Nick and I were told at my 20 week scan that our baby had a condition called Foetal Hydrops, which meant that there was fluid present in the foetal compartments. We were also told that Isaac was suffering from a heart condition whereby his heart was beating far faster than it should have been. I was put on medication for the remainder of my pregnancy to try and bring his heart rate down, and we also had to go for regular check-ups at Great Ormond Street Hospital in London every three to four weeks. This did really worry us but we thought with the medication and regular appointments with the doctor, it would be under control. The medication did begin to regulate Isaac’s heart rate but at 27 weeks into my pregnancy the fluid started to return, which is why at 31 weeks we were told I needed an emergency C-section. We were terrified - I think you always immediately think the worst when you are told your baby will have to be delivered early. On Boxing Day 2012 our little boy Isaac was born. Isaac was delivered in The Rosie hospital in Cambridge as the seriousness of his condition meant that he needed specialist care that our local hospital in Peterborough were unable to provide. We were both really worried and stressed with the whole situation, everything seemed to be happening really fast and we were so far away from our home in Lincolnshire and our family. This was when we met Alan, the House Manager of Chestnut House. He whisked us away to the house and we cannot begin to explain the relief that swept over us. Chestnut House is a ‘Home from Home’ run by The Sick Children’s Trust which is a charity that provides free accommodation for families that have seriously ill children in hospital. The house was great as it gave us a private space to get away from the busyness of the ward and gather our thoughts. It had all the facilities we needed to look after ourselves; a private bedroom, clean bathroom, kitchen and even laundry room. The best thing about the house was its close proximity to Isaac. The house was located within the hospital grounds and only a two minute walk away from Isaac’s bedside so we could be with him in no time if we were ever needed urgently. It was also really important for me; because I had a C-Section I was told to rest as much as possible, so being close to Isaac meant that I did not put too much strain on myself and it allowed me to recover more quickly, which is what I needed if I was to look after Isaac and remain strong for him. I think being in the house generally helped our well-being. We were really able to look after ourselves which helped keep our energy levels up for Isaac. We made home-made meals every night which was fantastic. If we hadn’t had the kitchen to do this we would have had to live on takeaways and fast foods. This wouldn’t have helped our mentality at all and especially wouldn’t have helped the quality of breast milk I was feeding Isaac. We also met a lot of families in Chestnut House that were in similar situations to us - it was good to have them to talk to and it really reinforced for us the importance of the accommodation that The Sick Children’s Trust provides. Nick and I have two other children, Leah aged 13 and Harry aged 5. We were really lucky that while we were staying in Chestnut House they were able to stay with their grandparents and have that stability. Of course they came to visit us, which was lovely as we missed them so much and they wanted to meet their new little brother. It was really great being able to bring them in to the house and show them where we were staying. It also enabled us to spend some quality time with them in a quiet environment away from the hustle and bustle of the hospital. We had heard about The Sick Children’s Trust before we stayed in Chestnut House, but we didn’t really know about the work they did before we came to be in the situation of needing their help. Quite simply, without the ‘Home from Home’ they and Alan provided, we don’t know how we would have coped. The house offered everything we could possibly need, and Alan was amazing. Nothing was ever too much for him, he put us both at ease the moment we met him and his open door policy ensured that we could call on him for anything if we needed to. One thing that really surprised me by staying in the house is how clean it remained; when you’re living in a house full of people you don’t know, you wouldn’t expect the high standards of cleanliness we experienced and I really believe this is down to the way the house is managed and looked after. Isaac is home now where he belongs. During his three and a half weeks in hospital he received lots of treatments to help him recover from his heart condition. He spent the first two weeks in The Rosie hospital and was then transferred to Peterborough for the remaining week and a half. Since then he has been to lots of follow up appointments. We are now so happy to be able to say that in April 2013 he received the all clear from the Cardiology department and he is doing really well. His heart condition seems to have fully resolved along with the Foetal Hydrops. Doctors at the hospital told us that they are still unsure why Isaac’s condition took such a bad turn and that he will remain a ‘mystery baby’. But the main thing is that Isaac is home now and is growing into a healthy little boy. We are really thankful to The Sick Children’s Trust for enabling us to stay by Isaac’s side the whole time he was in hospital. Without their help I really don’t know what we would have done or how we would have coped with the situation. Nicola Butler, Isaac’s Mum