Eckersley House made a world of difference to us...

We were not aware of The Sick Children’s Trust until we found ourselves in need of their help, but now we don’t know what we would have done without them. When my partner, Maxwell and I found out at my 20 week scan at Hull Royal Infirmary that our baby had Hypoplastic Right Heart Syndrome (HRHS), a condition where the right atrium and right ventricle are under-developed, we were really shocked. We are first time parents and I think you always expect that everything is going to be ok. When we were told it wasn’t, we were devastated. We had to go to Leeds General Infirmary (LGI), a specialist hospital, to have more scans to check on our baby’s condition which in itself really frightened us. We were told that there was nothing that could be done until our baby was born, so all we could do was wait. For the remainder of my pregnancy, doctors kept a close eye on the baby and I, and what was supposed to be an exciting time for us became a time filled with anxiety and apprehension. We had no idea what to expect when he was born and we were just praying that everything would be ok. I was a week past my due date when I was told that I would need to be induced at the LGI so that if there were any complications, all the cardiac staff would be on hand to help. After three days of waiting to be induced our lovely little boy, Flynn was delivered on 16th July 2012, eleven days late, weighing 8 pounds, 10 ounces. We were thrilled and so excited to meet him, but this soon turned to worry when he had to be whisked off to the neo-natal intensive care ward (NICU) for assessment. Flynn had to stay on NICU because of his heart condition and we were unable to stay with him, as the staff on the ward worked on a one to one basis with every child and there wasn’t enough room for families to stay. We live in Hull which is over 60 miles away from the hospital and over an hour’s journey away by train. We knew that we couldn’t leave Flynn’s side; the thought of him being alone in hospital was unimaginable, and we never wanted to be that far away from him. Fortunately we didn’t have to be, as we were offered a room in The Sick Children’s Trust’s Eckersley House. The Sick Children’s Trust runs free ‘Home from Home’ accommodation for families who have seriously ill children in hospital. The nurses on Flynn’s ward gave us directions to the accommodation and when we arrived Caroline, a house assistant at Eckersley House welcomed us in and gave us a guided tour around the ‘Home from Home’. A weight was immediately lifted off our shoulders. We had wanted to focus our attention solely on Flynn but we had been forced to worry about the practicalities of what we were going to do and where we were going to stay. When we were told about Eckersley House, all this worry immediately disappeared. The house was brilliant as it was just across the road from the hospital, only a five minute walk from Flynn’s ward and the hospital’s breast feeding facilities, which was essential for me as a new mum. The house had everything you could possibly need: a clean kitchen, bedroom, bathroom and laundry room. It really felt like a second home to us; we could cook a home-made meal, have a shower and get a clean change of clothes. I really think that doing this helped to keep our spirits up and keep us positive for Flynn, which is what we needed to be, to help him recover. After four days on the ward, we were told that Flynn’s condition was much more complex than the doctors first thought. He needed open heart surgery to treat his condition, however even with the surgery there was a 50 per cent chance that he may not survive. We were distraught, we couldn’t believe what was happening; our little boy had only been in the world four days and there was a chance he may not make it through his operation. There was nothing we could do and we felt totally helpless. We couldn’t face the possibility of saying goodbye to Flynn but without the heart surgery, we were told that he wouldn’t survive past ten days. Flynn had the open heart surgery and was in theatre for a total of eleven and a half hours. I can honestly say this was the longest day of our lives and there was nothing we could do but try and wait patiently, repeating to ourselves that he was in the best place. Finally, after what seemed like a lifetime, Flynn came out of his operation and came through. I cannot even begin to explain what we felt when we saw him. We were thrilled and although he still had a long way to go, we were so happy that he was past the operation and on the road to recovery. Staying in Eckersley House meant that we could stay together as a family and bond with our new son. We were only ever five minutes away from Flynn, so we never missed anything and we could relax in the house knowing if anything was to suddenly happen and alter his condition, we could be there really quickly. There was also a phone in our room which was connected directly to Flynn’s ward so we could be notified at any time of any change. Flynn stayed in hospital for a further ten days following his operation before we were able to take him home with us on 31 July and start our new life as a family. Since then, Flynn has had lots of follow up appointments and has been closely monitored for his condition. We recently took him back to the LGI on the 6 June as he had to have a second major heart operation, the Glenn Procedure. He was in theatre for six hours and spent a further eight days in hospital recovering. During this time we were very lucky to be welcomed into Eckersley House once again which ensured both Maxwell and I could be there for Flynn while he recovered. Flynn has just had his first birthday and has had a really hard first year with two major heart surgeries. We feel so lucky that he has grown into a healthy little boy who is learning to walk and is almost talking. He is amazing and our little family is together at home where we belong. Eckersley House made a world of difference to us; it took all the stress and worry away of where we were going to stay and ensured we could always be together. Not only this but the emotional support we received from the staff was incredible; they are so understanding and are always there for you if you need them. We will be forever grateful for the support The Sick Children’s Trust gave us and we will never forget the staff at Eckersley House. Stef Westmorland, Flynn’s Mum

We were devastated with Bethan's diagnosis and couldn't believe she had such a rare illness...

When my daughter Bethan was just nine months old, she was diagnosed with a fracture of the femur (thigh bone). This was the first symptom of weakened bones that she had experienced, and it led to her diagnosis of Osteogenesis Imperfecta (OI) which is more widely known as brittle bone disease, OI is a bone disorder that weakens the bones causing them to break very easily. It is a rare condition that affects only 7 in 100,000 people worldwide. We were devastated with Bethan’s diagnosis and couldn’t believe that she had such a rare illness. Bethan is now 13 years old and she has grown up with OI. As a family we have become used to her condition, however recently she has been suffering from scoliosis, a complication of the condition which causes her a lot of pain. Scoliosis causes the spine to curve from side to side, forming an ‘S’ shape. To treat the condition we were told Bethan would need to have spinal surgery. Although the thought of her having such serious surgery was terrifying, I hoped that it would help to relieve the intense pain she had been suffering; I found it really difficult to see her in so much pain, knowing there was nothing I could do to help. Our local hospital, University Hospital of Wales was unable to give Bethan the treatment she needed. We were told that for her surgery we would need to go to Sheffield Children’s Hospital, a recognised centre of excellence for OI. Sheffield is 200 miles away from our home in Merthyr Tydfil, South Wales so in practical terms this wasn’t going to be easy for us. We had no plans for where we were going to stay or what would happen when we arrived. What we did know was that in Sheffield Bethan would receive the best possible care and for that we would have travelled anywhere. On the 17 September 2012 we arrived at Sheffield Children’s Hospital and Bethan was taken into surgery almost right away. While we were waiting for her to return to the ward we noticed some leaflets advertising Treetop House, accommodation provided by The Sick Children’s Trust. We asked a nurse about the ‘Home from Home’ accommodation and she contacted Ann the house manager, who couldn’t have been more helpful. She offered us a room in the house where we could stay for the entire time Bethan was in hospital. We were so pleased; the house was located on the top floor of the hospital so we would never be too far away from Bethan. It was really important for us to be with her and being offered a room so close to her ward was fantastic. It also alleviated any other stresses we may have had during this difficult time, as without the house we would have had the extra worry of travelling the long distance home every day and leaving Bethan, or the expense of staying in alternative accommodation in Sheffield. The house really was a ‘Home from Home.’ Even though it was within the hospital as soon as you walked through the doors you felt like you were in a different place. We were able to disconnect from the ward and have a proper rest. The facilities were just what we needed; we could have a shower, get a change of clean clothes and cook a home-made meal. It offered the perfect distraction even if this was just putting a load of washing on or washing the dishes after dinner. We usually took it in turns to go back to the house and rest so Bethan was never alone. But if we did both go back to the house, Bethan was comforted by knowing we were only going upstairs, which was great. We were also able to relax knowing that if there was any change in her condition we would be notified as soon as possible, as the nurses could call through to the phone in our room. Something I will never forget about our time in Treetop House is the emotional support we received from the other families and the staff. We were going through such a difficult and worrying time and talking to other families who were going through similar experiences to us was really helpful. We were able to support each other and help each other through the different emotions we felt every day. The house staff really helped to create a homely atmosphere; they always had a smile waiting for you and after a hard day on the ward this was really welcome. My older daughter Lauren, who was 17 at the time, was also able to come and stay in the house, which was lovely as we missed her so much and she really helped to lift Bethan’s spirits. Had Lauren not been able to stay, it was unlikely she would have been able to visit at all as the hospital was so far away from home. Bethan was in Sheffield Children’s Hospital for ten days in total and without The Sick Children’s Trust I am unsure how we would have coped. The accommodation the charity provides enabled our family to stay together by Bethan’s bedside and enabled us to wake up to each new day stronger and more hopeful than the day before. Since coming home Bethan has experienced a lot of problems. We have been told that it is likely she will need further surgery to treat her condition and now we are just waiting for an appointment with the surgeon. Our journey is very much continuing and it is likely Bethan will have to go back into Sheffield Children’s Hospital. It is scary not knowing what is going to happen but charities like The Sick Children’s Trust make us that little bit less apprehensive, as we know they will be there to help us when we need them. Ceri Morgan, Bethan’s Mum