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