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

At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement....

At 36 weeks into my pregnancy, my husband Jay and I thought we would be full of excitement preparing for the arrival of our baby. Instead we felt apprehensive and worried. At our 36 week scan, doctors noticed that our baby was in an excess of amniotic fluid which meant that he was not swallowing fluid as he should be. They concluded that this was because his ‘stomach bubble’ was very small and as a result of this he may be born with Tracheo Oesophageal Fistula (TOF). This is a condition which occurs when the oesophagus, the food pipe which connects the mouth with the stomach, is blocked. After telling us this news, they told us they wouldn’t be able to confirm the condition until he was born, which as you can imagine made us feel very uneasy for the remainder of my pregnancy. On 27 November 2012 our gorgeous baby boy, Winter Jay Hamilton was born at 39 weeks, weighing six pounds, six ounces at Hinchingbrooke Hospital. We were so happy and so excited but this was short lived when doctors confirmed that Winter did have a blockage in his oesophagus. They told us he would have to go straight to the Neonatal Intensive Care Unit (NICU) at The Rosie Hospital in Cambridge, to be operated on the next day. This was about a 45 minute journey away from our home in Wyboston, St Neots, but we couldn’t even think about the practicalities of anything at that moment. We just knew we had to get Winter the best possible treatment available and for him that was at The Rosie Hospital. Winter had an operation to repair his oesophagus the following day. Jay and I were so upset; our little boy had only been in the world one day and already had to go through all of this distress. We could think of nothing else but his recovery and didn’t want to leave his side. We hadn’t even thought about where we were going to stay until we met Alan, the house manager of Chestnut House. He offered us a room in the ‘Home from Home’ accommodation that the charity, The Sick Children’s Trust, provides and I cannot begin to describe the relief that swept over us. The house was brilliant because it was just below the NICU, so we would never be too far away from Winter and it really took an extra weight off our minds; we didn’t need to try and find somewhere to stay or worry about the financial costs this would incur. We were able to stay in Chestnut House free of charge for however long Winter was in hospital and we would never be more than a two minute lift ride away from him. The house facilities offered us everything we needed; there was a clean kitchen, bedroom, bathroom and even a laundry room as well. Winter’s recovery was the only thing we could think about but having the house ensured we could look after ourselves too. Although this was far from our minds at the time, looking back it was really important as getting some much needed rest and eating nutritional meals enabled us to keep our strength up and stay strong for Winter. Staying in the house also helped to give us a sense of normality in what was such a stressful and chaotic situation. We could put a load of washing on and cook a home-made meal. It sounds ridiculous now valuing these things so much, but at the time these tasks really helped us to cope with the situation. The first few days that Winter was in intensive care were heart breaking as we saw him sedated and covered in tubes from all different kinds of medical machines. It was horrible to see but we knew he was in the best place and he was being looked after. As the days went by Winter was getting much stronger. On the third day following his operation we were able to change his bedding and his nappy for the first time. It was such a big step and we were so happy to be able to do this. Doctors also showed us how to wash his little face and how to keep his lips moist. It was amazing to be able to do this ourselves, after watching only nurses and doctors do this so far and although we were welcoming parenthood a little differently to others, we were so excited. After a week in intensive care Winter’s doctors gradually reduced his medication and took him off his ventilator. We were so pleased; it was awful to see Winter taking in all this medication and without his ventilator we could finally see his beautiful little face properly. He was able to breathe all on his own, which was amazing, and we could finally see him on his way to recovery. Following this he had his chest drain and cannulas (tubes used to administer his medicine) removed which meant he only had the trans-anastomotic tube (TAT) left in for feeding. The nurses gradually began to up his feeds and we were thrilled; Winter was getting better and better. We were relieved; it seemed the worst was over. We could even have our first proper cuddles with him which were long overdue. We began to have meetings with the speech and language therapist (SALT team) to try and feed Winter by mouth; they helped him to practise his sucking instinct so he could take in his feeds more easily. This was really helpful, not only for Winter but for us too. We learnt something new about Winter’s condition every day and became able to cope with his needs a lot better. It was only because we were staying so close to Winter in Chestnut House that we could do this and be there for him day and night. If we had been staying somewhere else or travelling home, we wouldn’t have been able to get to grips with his illness as quickly as we did. I think there is always a fear of the unknown and the more we understood his illness, the better we felt about it and the more positive we were. A lot of babies with TOF also have other complications to do with their spine and kidneys, which we were worried about, but Winter’s tests came back clear, which was great news. He became stronger every day and after ten days in intensive care he was transferred into the Children’s Ward ‘C3.’ It was very different and we even had our own bed so we could stay with Winter and start practising night times with him. When Winter moved wards we thought that the next step would be to take him home. However he started experiencing reflux; a condition where milk swallowed starts to come back up into the oesophagus. Lots of babies suffer from reflux but because Winter had TOF as well, the surgeons said if the appropriate medication didn’t work he may need another operation. This would mean it would be weeks before we could take him home, not days as we had thought, which was devastating. Luckily the reflux medication slowly began to take effect and the doctors were a lot happier with his condition. After an x-ray video contrast (an x-ray taken while Winter was feeding), we were able to meet with the SALT team once again, the nutritionist and dietician. They were all really pleased with Winter’s progress and told us we could finally take him home. So on the 20 December 2012 we were able to take our little boy home, just in time for Christmas. Winter’s total hospital stay was just over three weeks and at fourteen weeks old he had his feeding tube taken out. He has made massive progress since; he is now taking all his food orally and has even started taking some purees. We are so thankful to The Sick Children’s Trust for offering us accommodation the whole time Winter was in hospital. Lucy Hamilton, Winter’s Mum