We will always value the accommodation run by The Sick Children's Trust...

The Sick Children’s Trust were there for us when we needed them most and they made a really terrible time in our lives a lot easier to manage. My husband Lee and I stayed in Guilford Street House for four weeks in July 2012 when our son Matthew was taken in to Great Ormond Street Hospital. Matthew was only three weeks old when he developed a cough and after three days without improvement we decided to take him to our GP, who diagnosed him with pertussis, more commonly known as whooping cough. He said that we should take him straight to Accident and Emergency at Barnet Hospital, our local hospital which really worried us. We had heard of whooping cough before and knew it was serious but having to take him to hospital was especially frightening. Matthew was admitted into the children’s ward that day and over the next few days his condition deteriorated; he was really struggling to breathe and his doctors decided that to give his body a rest, they would put him on a ventilator. However, even on the ventilator Matthew’s condition didn’t improve and after a further assessment from doctors, we were told the only way to stabilise him would be for him to go on Extracorporeal Membrane Oxygenation (ECMO,) a machine that is operated outside the body that continuously pumps oxygen into the blood. There are only three hospitals that offer this treatment in the UK, so in order for Matthew to be put on this life saving machine he had to be transferred to Great Ormond Street Hospital (GOSH) in central London. We couldn’t believe what was happening, Matthew was still so tiny and to know that he needed life saving treatment was terrifying. Matthew was in such a vulnerable condition that he had to be transferred to GOSH by The Children’s Acute Transfer Service (CATS,) which is an ambulance service that specialises in transferring children in intensive care. It took them three hours to get Matthew ready to transfer and after the long journey to GOSH it took another three hours to stabilise him on an oscillator. I can safely say that this was one of the longest days of my life. At three weeks old, the last thing I imagined I would be doing with by baby boy was spending time in GOSH. Matthew’s condition seemed to become so serious so quickly and it seemed like it could change at any moment. Our home is in Finchley, North London which is an hour away from GOSH. There was no way we could contemplate going back home and leaving our little boy on his own, so with no accommodation on his ward for us, we spent the first night sleeping on the floor of one of the meeting rooms in the Neonatal Intensive Care Unit (NICU). It was awful and I remember us both thinking that we should prepare for the worst as Matthew’s condition wasn’t improving and he was surviving at that moment because of the ECMO. Matthew made it through that first night and we realised that to stay close to him, we would need to find accommodation close by. We couldn’t spend the foreseeable future sleeping on the floor of NICU but we were also not going to go home and leave him, so this was our only option. We went down to talk to the Parent Advice and Liason Services in the hospital and they told us that GOSH didn’t have any rooms left that we could stay in but that we may be able to stay in Guilford Street House, a ‘Home from Home’ run by The Sick Children’s Trust. They phoned Tina, the house manager who said that they could offer us a room. I can’t begin to explain the relief that swept over us. The house was fantastic and it really became invaluable to us. Matthew was diagnosed at GOSH with pertussis and double pneumonia and spent over three weeks on the oscillator. We spent this whole time by his side and were only able to do this because we had Guilford Street House so close by. This was amazing as since the house was less than a five minute walk from his ward it meant we would never be too far away from our little boy. I just simply couldn’t face going home without him – I did go once during the three weeks and it was really upsetting. It didn’t feel right going home without him; seeing all the lovely gifts we had received from our family and friends for him just made me feel so much worse. There was no charge to stay in the house, which was great. Neither of us went to work when Matthew was in GOSH as we couldn’t deal with not being with him, so the free accommodation helped us to ensure we could keep up with the everyday payments at home. If we’d had to find alternative accommodation in London, it would have been really expensive and put an extra stress on us, which I really don’t think we could have coped with. We were also really lucky in that we didn’t even need to worry about our house as my mum was over from Australia and staying there with Lee’s mum who travelled from Wales. They both came to visit us at GOSH and it was really great to have Guilford Street House to take them back to. We could have a proper chat with them over a cup of coffee in a quiet environment away from the hospital. After three weeks in GOSH Matthew was taken off the oscillator and we were thrilled. Although he still needed a ventilator, this was a big improvement and we could finally say that he was one step closer to recovery and to coming home with us. It is such an emotional time seeing your child poorly in hospital, and between this and all the chaos and noise on the wards it was easy for the hospital environment to become too much. We had to wear masks whenever we were in Matthew’s room because pertussis is contagious. We found it hard to spend more than a few hours at a time in his room because of this, so we would often take it in turns to go back to the house and catch up on sleep during the day. It was great to be able to do this as it was essential for us both to rest in order to stay strong for Matthew but also, as we took it in turns it meant he was never on his own. There was also a phone in our room that was connected directly to Matthew’s bedside, so if there was ever any change in his condition, the nurses could notify us straight away. They did kindly call us on the phone once during the night to let us know that they had to re-ventilate Matthew, so that we wouldn’t be shocked when we saw him. The house had all the facilities you could possibly need; a clean bedroom, bathroom, kitchen and lounge area. It was great as it really made us feel at home and normal again but at the same time we were very aware that things were not normal in our lives. One thing we will never forget about the house is the emotional support we received. There were many families in the house, all going through similar situations to us and it was nice to talk to them when we got back from long days at the hospital. Tina was a wonderful support to us; she always had a smile for us and would always ask after Matthew. The support she gave us, even if it was just a chat over a cup of tea, made a lot of difference. After nearly five weeks in GOSH Matthew started breathing on his own and has recovered well. He still has very damaged lungs, but he is growing into a strong little boy and he is at home where he belongs. Since the outbreak of pertussis in the UK in 2012, women are now offered immunisation in the last few months of pregnancy to give their child immunity from the condition. As much as I wish this had been the case when I was pregnant with Matthew, I am so pleased that hopefully fewer families will have to go through what we have in the future. Since coming out of hospital Matthew has been ill with many different viruses and illnesses but he is here with us which is the most important thing. He is still under a respiratory consultant at GOSH with whom we still have regular appointments, and each time we visit we try and pop in to see Tina too. We will always value the accommodation run by The Sick Children’s Trust and we will never forget the help they gave us. Michelle Williams, Matthew’s Mum

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

My son Joseph was born 12 weeks premature on 5 October 2012...

The Sick Children’s Trust’s Chestnut House supported my family when my son, Joseph was born 12 weeks premature on 5 October 2012 at the Rosie hospital in Cambridge. As you can imagine, being so premature Joseph was so tiny and because of this he had lots of complications and he had to stay on the Neonatal Intensive Care Unit. From the moment he was born we were on tender hooks with him. He was all we could think about from day one. When he was just four days old he was rushed for emergency surgery as he had a suspected perforated bowel. This turned to be three small holes in his bowels which that had to be cut and a stoma created. We were so worried as he couldn't breathe unaided and was on CPAP to assist his breathing. I kept thinking he was just so little, how could I help him? For the first week of his life I stayed on the post natal ward at the hospital but after this I was fortunate enough to stay at Chestnut House, a ‘Home from Home’ provided by the charity The Sick Children’s Trust that provides free accommodation for families of sick babies at the hospital. This was a god send for us as it meant we could be there for Joseph day and night if needed and because the charity is on the hospitals grounds it’s just moments away from the ward which reassured us no end. And even though Joseph was too young to know we were there it was important for me to be there by his side as much as possible. Chestnut House became my home for nearly a month. It was lovely having a place away from the ward I could retreat to and have lunch, read for a while if Joseph was sleeping and just 'take a breath'. As I lived just over an hour away from the hospital in Suffolk but also due to my health (I've had a kidney transplant and a heart attack) the added stress of having to travel would of made me really poorly, so knowing I was right there with Joseph really did mean a lot to me and my health. Unfortunately my partner couldn't stay with me at the house as he had to return to work, but when he did come to the hospital to visit it was really important that there was somewhere we could go and eat a normal cooked dinner instead of getting something from the canteen in the hospital. We’d try to relax a little and just be there for each other and this helped make us feel ‘normal’ again. My mum even stayed at the house with me on one occasion which was lovely just to have some company. As there was a phone in my room with a direct line to the ward it was very reassuring to know that I could ring the ward from my room anytime of the day and also that the ward could contact me if they needed to. It was really helpful being with other families too as we could all support each other as we were all going through the same thing, to be able to talk to parents that know how you are feeling and not just emphasising with you. Nearly seven weeks after Joseph was born he was transferred back to our local hospital in West Suffolk where he stayed for two weeks before being transferred back to the Rosie hospital to undergo surgery to reverse his stoma. I once again stayed at Chestnut House for just over a week and it was so reassuring to be in familiar surroundings again – it was almost like coming home. Alan Booth the house manager was an incredible support to me, I feel we bonded well and just having a normal chat with him sometimes would just help to relax me. Joseph is now a happy, healthy seven month old little boy and is thriving, he is catching up with his weight and we have just started to wean him, which is great fun. He has been discharged from Addenbrooke’s Hospital and now so we are just under our local hospital. To be perfectly honest I hadn't heard of The Sick Children's Trust until I stayed in the house and it really is true to say that it’s one of those charities that you don’t really realise how important a role they play until you need them, and then you realise that you going through this experience without them would have been very different. I don’t know how I will ever thank them for their support but I am currently organising a family fun day in aid of them to try and show them how much they mean to me and my family. Kelly Hill, Joseph’s mum

We had planned Rokie's arrival so differently, but for the weeks following his birth we spent every day in hospital...

Our son Rokie was born at Sheffields Children’s Hospital on the 15th October 2012 and for the next six weeks The Sick Children’s Trust’s Treetop House became our home. We had planned his arrival so differently, but for the weeks following his birth we spent every day in hospital by his bedside. At eight weeks into my pregnancy I had a scan that revealed Rokie had a condition called Gastroshcisis, which meant that his bowel was protruding on to the outside of his body. Rokie’s condition was a shock to both my partner Arren and I and we were so concerned for him. The doctors told us that they would have to wait until he was born to treat the condition. I think throughout pregnancy you worry generally, but in my case the early diagnosis of Rokie’s condition made me constantly nervous and anxious about what would happen when my little boy was born. Shortly after Rokie’s birth in October, doctors started to treat him for Gastroshcisis, by using the silo bag treatment. The treatment is started by sliding the intestine into a silo bag and then over the next few days the intestine is gently squeezed back into the abdomen. It is a slow process that takes place over many days but we were told that it was an effective way to treat Rokie’s condition, without him having surgery. The nature of the treatment meant that each new day presented a different situation, there was a constant worry, wondering how it was going to go every day. There was no way that we were going to leave Rokie alone in hospital, especially when he was undergoing treatment that could alter his condition at any moment; which is why we were so relieved when the nurses on Rokie’s ward told us about Treetop House. We wanted to be by his side every step of the way and the ‘Home from Home’ run by The Sick Children’s Trust charity enabled us to do just that. Treetop House provided accommodation for Arren and I and also our other two children, Cayc aged three and Coby aged two. It took such a weight off our minds knowing that we could all stay together as a family and be close to Rokie. Without our room at the house our family would have been separated and Cayc and Coby wouldn’t have been able to get to know their new younger brother. The silo bag treatment seemed to be going really well at first and the intestine had almost fully gone back into Rokie’s abdomen. However when I went down to see him on the sixth day of treatment, I knew there was something wrong. Rokie didn’t seem like himself and by the evening he became really unsettled and started to scream, which was really unlike him. Being able to stay just a lift ride away from Rokie in Treetop House meant that we could spend all our time with him and really get to know him and it was because of this I knew that there was something wrong and he wasn’t himself. The doctors rushed to Rokie’s bedside and said that the silo bag wasn’t working as well as they had hoped. I can safely say that the day that followed was the longest of my life; Rokie had to have many different tests across the course of the day and we stayed with him all day and night. We were so worried what the outcome of the tests would be and what the results would mean for him. Rokie’s doctors told us that he would have to have surgery immediately to treat his condition. He was still so tiny, we couldn’t believe what our little boy was having to go through so early on in his life. We were terrified for him but we knew he was getting the best possible care he could and that he had to have this operation. Having accommodation so close to the ward to go back to was invaluable; we were able to stay with Rokie all day and evening without worrying about travelling home, as we only had a two minute lift ride to Treetop House. The house really did become a ‘Home from Home’ for us, we felt so comfortable and the facilities were amazing. We could cook home-made meals, which was vital for us because the food available at the hospital would have cost a lot when added up over the weeks and it wasn’t the most nutritional food for a growing family either. There was also a playroom in the house which was great for the children. It meant we could relax and rest when we were at the house while they could happily play. The staff in the house really made the lovely atmosphere we experienced. They were so caring and there was always a friendly face to greet us when we were going in and out. The majority of our time we spent on the ward with Rokie, so we didn’t speak to the staff too much, but it was lovely to know that they were there for us if we needed them and we always gave them updates on how Rokie was getting on. Following Rokie’s first major surgery he had to have a few smaller operations but we are really happy to say that Rokie is now home. We still take him for check-ups every three months but he is doing really well and we are so pleased. The Sick Children’s Trust helped us when we needed them most. We will never forget the help they gave to us; we were facing such a difficult and stressful time and they enabled us to do this as a family by Rokie’s side. Kim Parkin, Rokie’s Mum

My husband and I have stayed at The Sick Children’s Trust’s Acorn House three times in the last year ...

My husband and I have stayed at The Sick Children’s Trust’s Acorn House three times in the last year and it really has been invaluable to us on our visits to Addenbrooke’s Hospital in Cambridge with our daughter. Our first and longest stay at Acorn House was for 30 days in which the house really did become our home. Ivy was diagnosed with Cerebral Palsy at only one year old and some months later was also diagnosed with epilepsy. She had been on medication for this and had suffered mild seizures. However in January of last year, Ivy suffered a severe seizure and was rushed to hospital. Doctors now suspect that Ivy has a genetic condition in addition to Cerebral Palsy. Since the seizure Ivy, has had a reduced quality of life and limited abilities. It would be extremely rare for a child to have both conditions but it is not impossible. We were heartbroken about the prospects of this, our funny joyful little girl had vanished overnight and we had a different child now with even more care needs that we could not make comfortable. It was hard to get through each day and we were constantly distraught. The Sick Children’s Trust provides private accommodation for families with sick children who are in hospital undergoing treatment. The charity runs eight ‘Homes from Home’ around the UK close by to six major children’s hospitals in the country. Without Acorn House we would not have coped, we live 1 hour drive from Cambridge, and we never wanted to leave Ivy alone. As a parent when your child is unwell the thought of leaving them alone in their most vulnerable state is unimaginable. I am self-employed, which meant that I did not earn when Ivy was in hospital, this meant we needed to control our spending. If we didn’t have Acorn House we would have spent huge amounts on accommodation and living expenses. To have Acorn House to get some respite was like being in a wonderful hotel. One of us would always rest while the other could stay by Ivy’s bed side. Ivy does not sleep well, and during her hospitalization her sleep was limited to about six hours. It was always reassuring to know that the nurse could directly call our room if there was the slightest change in Ivy’s condition. This was especially important when Ivy was unconscious and on a ventilator, it took Ivy six days to open her eyes. I really believe that if we had not been able to rest during Ivy’s hospital stays, we would not have been able to promote a positive vibe to her which definitely helped and still helps her recovery. We also made some really good friends while staying at the house. Every family staying in the house was going through the same experience, and so it helped to talk and realise that you were not alone. Joy, the house manager and her team were amazing, she always had a smile and was always there to help with everything. Acorn House gave us the strength to cope with the intense stress and worry. Towards the end of Ivy’s hospitalization we were even able to bring her to the house. This was so helpful when we needed to pack and prepare to leave. After a month, just being able to cross the road and sit in an armchair with her made a huge difference. Ivy now three years old, is still very unwell, but she is recovering slowly. We spend every second of the day working to rehabilitate her and fight for the best medical treatment available. We pray that the future is brighter for her now. Before Ivy became ill I knew nothing about The Sick Children’s Trust, but now I cannot imagine what we would have done while Ivy was in hospital without them or what we would do in future if they were not there for us. We cannot thank them enough. Jenny Knight, Ivy’s Mum

The birth of our daughter and first child, Rachel in January 2013 was such a difficult time

The birth of our daughter and first child, Rachel in January 2013 was such a difficult time, and The Sick Children’s Trust helped by providing us with free accommodation in its Treetop House at Sheffield Children’s Hospital. Rachel was born at Kings Mill Hospital in Sutton in Ashfield Nottinghamshire on the 23rd January, and diagnosed some 12 hours later with both Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) which are rare congenital conditions that affect approximately 1 in 3,500 newborn babies. The pre-natal scans had shown no problems, so this was a complete shock to us both. These conditions require intensive neo-natal care and corrective surgery within days of birth, so Rachel was transferred from the Neonatal Intensive Care Unit at Kings Mill Hospital to the Neonatal Surgical Unit (NSU) at Sheffield Children’s Hospital, which specialises in this type of surgery. It was only then that we heard about The Sick Children's Trust, and my wife Lisa and I stayed in Treetop House from the 24th January to the 9th February 2013. With TOF, the food pipe (oesophagus) is connected to the windpipe. Without surgical intervention, this allows air to pass from the windpipe to the food pipe and stomach. It can also allow stomach acid to pass into the lungs. With OA, the food pipe (oesophagus) forms a closed off pouch that prevents food from reaching the stomach. Prior to surgery, this pouch can fill up with food and saliva, which can eventually overflow into the baby’s trachea (windpipe), entering the lungs and causing choking. With our home in Sutton in Ashfield, staying at Treetop House made family life (which, as for many people is important to us) so much easier, enabling us to be close to our daughter and to bond in the first few weeks of her life. My wife was able to express her milk and eventually start breastfeeding just before we left the hospital. It was an amazing achievement to go from saline drip, to tube, to bottle feeding and then eventually breast feeding all with her mother’s milk. This would have been a difficult process without the support of The Sick Children’s Trust. Treetop House is located just a lift ride away from the wards, so staying on site saved us a minimum of two hours travelling every day. It removed the stress of travelling in the bad weather (at this time it was snowing) and allowed us to be close to Rachel 24 hours a day. We could get up for her feeds and cares through the night and day, continuing the family bonding. Having somewhere to go and sleep throughout the night and day, to eat properly and relax made life so much easier and helped to keep our strength up and our emotions together. It also allowed us to mix with other families in a similar situation, which made us feel less alone. We are now at home and Rachel is recovering really well and showing no real signs of her ordeal apart from her need for various medicines. She will continue to have appointments with the consultants until she is sixteen, and further surgery may be necessary if feeding proves difficult later in life. We are so grateful for the support of The Sick Children’s Trust, since without them a difficult period in our life would have been even more stressful – for this we will never be able to thank them enough. Tim Ash, Rachel’s dad

Every day is a step closer to taking our little boy home...

On 17th December 2012 our baby boy, Noah was born 15 weeks premature at The Rosie Hospital in Cambridge and was sent straight to the Neonatal Intensive Care Unit (NICU). His early birth was such a shock to my husband, Dan and I. It was even harder to cope with as we had been monitoring my pregnancy really closely to prevent this from happening, due to us losing our first baby at 24 weeks in November 2011. We met Alan, the house manager of Chestnut House, the day after Noah was born and he told us about the ‘Home from Home’ accommodation The Sick Children’s Trust provides. In one conversation all our worries about accommodation were solved; we were able to stay in Chestnut House free of charge while Noah was in hospital. The house is located within The Rosie Hospital and is only a two minute walk away from the ward, which meant that we were never too far away from Noah and could always be there for him when he needed us. We live in Bedford which is an hour’s drive away, so without Chestnut House we would only have been able to visit the hospital once a day. Apart from the distance this would have put between us and Noah, it would also have been really expensive to travel back and forth every day. The Sick Children’s Trust was amazing and provided exactly what we needed. Noah was really tiny when he was born due to his premature birth, weighing just 2lb. Aside from his tiny weight, we were also told that he had a pulmonary haemorrhage on his lungs and an open duct in his heart. If this wasn’t terrifying enough, the doctors also told us that there were some issues surrounding his brain. We were distraught and so worried; we just kept thinking that Noah was too tiny to have all these possible conditions. Noah was in The Rosie Hospital for two weeks and we were able to stay at Chestnut House every night, which was a God send. It enabled us to get some rest, shower and cook proper meals, all the while knowing that if anything happened we could be with Noah in a matter of minutes. When Noah did grow to become a little stronger we were transferred to Lister Hospital in Stevenage; this really raised our hopes and we thought Noah was getting better. But then he developed a severe case of Necrotizing Enterocolitis (NEC) and we were rushed back to The Rosie Hospital. For a second time on 28th January this year, we were lucky enough to be welcomed back into Chestnut House. Being at the house gave us time with our baby. Without this, we would have only been able to manage a daily visit and would have missed out on so much of Noah’s early life. If we had been in the position that many others find themselves in, being far away, we wouldn’t have had the special moments where we were able to connect with Noah. The close proximity of Chestnut House to Noah’s ward was really important for me too. Because of the C-section I had with Noah I was told to rest, so being only a minute’s walk from his bedside was perfect for me. I remember one night going upstairs to say goodnight to Noah and he was really crying, for the first time ever, as he was nil by mouth at the time. The nurse suggested I hold him and comfort him to get him settled. Almost as soon as he heard and smelled me, he calmed down and dropped off to sleep. I was able to experience this very special moment because I was staying in Chestnut House and was only two minutes away from him; if I had been at home I almost definitely would have missed this moment. The timing of Noah’s birth meant that we spent Christmas and New Year in the house which was hard, but being able to have dinner and laugh together with other families made it feel a little bit more festive, even though we were all going through a difficult time. It was such a support to have other families in the house that we could talk to. We were able to share our hopes, fears and dreams for our little ones. Chestnut House really brings together a community of ‘shared experience,’ and it is reassuring to know that others are going through a similar journey to you and to know you are not the only ones. Our family could also come and visit, which was really important to us especially over Christmas. They could all visit Noah and it was really lovely that they could have a coffee with us in a quiet environment away from the busyness of the hospital. It was these little things in the house that made such a difference to us. Also, having Wi-Fi in the house meant that we could go on the internet and for us this was a way of coping as we started a blog that we wrote on every night. It became a diary for us both and was so therapeutic. We cannot thank the staff at Chestnut House enough. Alan’s support and understanding during this difficult time is something that we wouldn’t trade for the world. He has such a wonderful way of making you laugh one minute but then to listen sensitively to the difficulties going on for you and your family in another. Noah is currently at Bedford Hospital. He is improving every day and although life has changed dramatically for us and it’s not exactly how we planned it, every day is a step closer to taking our little boy home. Chestnut House and the staff have definitely made our journey a lot easier to manage and we cannot thank The Sick Children’s Trust enough. Jen, Noah’s Mum

Crawford House has been there for us twice now.

In August 2011, my wife Gemma was having a few problems in her pregnancy and on 18 August 2011 we went to our Hospital (Durham) as we had several times, just expecting Gemma to be examined and be sent home again. When we got to the hospital a doctor examined Gemma and quickly ran to get a senior doctor, leaving the midwife to explain to us that Gemma was in labour and the baby was on its way. Gemma was only 25 weeks pregnant! We were very quickly rushed to the Royal Victoria Infirmary (RVI) in Newcastle. When we arrived the doctors explained to us that because our son was so premature he would spend a long time in Special Care Baby Unit (SCBU), probably until his actual due date. It was such an emotional time, we did not know what we were going to do. Our baby would have to stay in the RVI and we live almost an hour’s drive away. I was shown around SCBU and was told about Crawford House, a place where we could stay while our baby was in hospital. It was such a relief to know that we could stay so close to our little boy. Benjamin was born four days later on 22 August 2011 at 2:10am at only 25 weeks 5 days gestation (almost 15 weeks premature) weighing only 1lb 12oz. He was transferred to SCBU to be ventilated and put on life support. Gemma was discharged two days later and luckily we were informed that there was a room at Crawford House for us. Crawford House is located in the hospital grounds, only 5 minutes walk away from the ward. Gail showed us around the house, and it was more than we had expected. Staying at Crawford House allowed us to be close to Benjamin 24 hours a day. We stayed there for 79 days until Benjamin was well enough to be transferred to our local hospital. Gemma stayed at Crawford House every night, but I had to work so I had to come home for three days a week. It was always a relief coming back to Crawford House every Friday night; with my wife and son there it always felt like I was coming home. We would spend all day on the ward with Benjamin and come back to Crawford House to eat and sleep. I remember two occasions in particular, once when Benjamin needed help with his breathing and we stayed with him on the ward until very late, and once after we thought things were improving and Benjamin was getting better, he took a turn for the worse and needed to be resuscitated and put back on the ventilator and life support. The hospital phoned us in our room and updated us on Benjamin during the night. When things were so tough it was a great comfort knowing that there was somewhere close we could go for some peace and quiet or a lie down when we were just so exhausted. We spent every waking moment on the ward, and we would not have been able to do that had Crawford house not being there for us to rest and recharge. When we had visitors it was nice coming back to Crawford House for a cuppa after spending hours on the ward. We also found it helpful being around families that were going though a similar situation to us. It was nice going back to Crawford House and speaking with other families; it gave us a sense that we weren’t alone in our situation. We made some good friends at Crawford House. Benjamin came home a happy healthy baby two days before his actual due date, spending a total of 99 days in hospital. A few months after Benjamin came home, even after everything we had been through, we decided to try for another baby and we were soon pregnant with our second child. Gemma had a pretty good and problem free pregnancy until one day she started to have the same symptoms she had had when she was pregnant with Benjamin. We knew what was coming so Gemma rushed to hospital on 10 September while I stayed at home with Benjamin. Gemma was immediately admitted onto the ward. She was told that there was only a small chance of delivering early, but they still wanted her to stay in hospital overnight. During the night Gemma’s symptoms got worse and our worst fears were realised, she was in labour and baby number two was on his way. Gemma was only 24 weeks pregnant. Jacob was born very quickly the next morning, 12th September 2012 at 12:58, 16 weeks early, weighing a tiny 1lb 9oz. We knew what kind of journey we were going to have. In some ways that knowledge made it easier, but we knew it would be harder this time as Benjamin was only 13 months old. Jacob was transferred to the RVI that evening, and it was comforting to know that if Crawford House had a room we could stay there and be close to Jacob just like we had been for Benjamin. Once Jacob had been transferred to the RVI Gemma spent another night in Durham hospital. During the night she had had a call from the RVI saying Jacob needed a blood transfusion (the first of many). We were desperate to get to the hospital to see him and so the next morning when Gemma was discharged from hospital and we all went straight to the RVI to see Jacob. Gemma phoned Gail at Crawford House explaining our situation and she remembered us from the previous year. When we arrived Gail was more than welcoming; she allowed us to use Crawford House facilities to give Benjamin his lunch and gave us a room straight away. We were very grateful for this as otherwise we could not have spent the day at the hospital with Benjamin, it meant one of us could stay at Crawford House with Benjamin and one of us could be on the ward with Jacob. Being able to stay at Crawford House this time around was even more important as we had Benjamin. He loved playing in the play room and watching DVD’s in the living room. As with any 13 month old, he did not like sitting in the hospital with us for very long, so we would take it in turns being at Crawford House with him. This time around we could not stay together at Crawford House every night as Benjamin missed being at home after a few nights. Luckily I did not have to go into work much while Jacob was in hospital, so we would stay in Crawford House together for at least 2-3 nights of the week and for the rest of the week Gemma and I took turns to be at Crawford House or at home. When Jacob was a few weeks old he needed heart surgery and he needed to be transferred to the Freeman Hospital at the other side of Newcastle for this. Jacob was to be transferred to the hospital at 7.30am. The night before, Gemma and I stayed at Crawford House, leaving Benjamin with a friend for the night, so we could go to the Freeman Hospital with Jacob. It would have been very difficult for us to get to the hospital that early in the morning if we were not staying at Crawford House. Jacob’s time in hospital was a little tougher than Benjamin’s. Jacob was on a ventilator for seven weeks and had quite a few ups and downs in that time. We stayed at Crawford House until Jacob was ready to come home (108 days) on 30th December 2012 which was 2 days before his due date. Five months after Jacob’s birth we are home as a family enjoying each and every day. We do have a few appointments at Newcastle and on those days Crawford House are happy to allow us to use their kitchen to feed our boys. We cannot thank The Sick Children’s Trust and Crawford House enough. Having a room and somewhere we could go for 5 minutes to escape from the hospital was invaluable to us. We also became friendly with Jennie and it was nice to be able to go to Crawford house and have a little chat. We and our boys will be forever grateful to all the staff. By Michael and Gemma Oliver, Benjamin and Jacob’s parents

I gave birth to identical twin girls at Wolverhampton hospital....

On 2 December 2012 at just 25 weeks pregnant I gave birth to identical twin girls at Wolverhampton hospital - Angel Stewart who was 1lb13 ounces and Maisy Stewart, who was 1lb 3 ounces. Sadly our baby Angel passed away shortly after birth. This was the start of Maisy’s long journey to get home. On 11 December Maisy was transferred to the Rosie Maternity Hospital in Cambridge as it was the closest specialised hospital to us. It was here that my partner, Sean, and I were told about Chestnut House, a ‘Home from Home’ facility that provides free accommodation to the families of sick babies being treated at the hospital. The room was just downstairs from the Neonatal Intensive Care Unit and I was so pleased to be able to stay there as we were still in shock from the birth of our girls and losing Angel that neither Sean nor myself could not bear the thought of leaving Maisy. The morning after we had arrived Alan Booth Chestnut House Manager showed us around Chestnut House. It was great to know there is a friendly face around if we need anything or have any questions.

We could not face speaking to anyone after what we had been through but living in the house with others around us who are also in the same situation made it a lot easier to start talking about our journey’s together. We found some great friendships in the house that I’m sure will continue when we return home. It’s now the start of February and we have now been in Chestnut House for eight weeks. We feel so privileged to be staying so close to Maisy for her time in hospital. We have been able to spend more time with her than we could ever imagine with than if we were commuting from our home in North London. It is great to be able to go upstairs any time of the day but also to be able to come back to the house and have some normality, especially when we have visitors up, to sit and have a cup of tea in the living room as if we were at home is lovely. Maisy still has a long journey home ahead but thanks to Alan and The Sick Children’s Trust we have had somewhere safe, friendly and homely to stay and will be forever grateful for your kindness and hard work. Kirsty and Sean, Maisy’s parents