Our baby had a 50/50 chance of survival

At our 20 week scan our baby was diagnosed with a condition called CDH (congenital diaphragmatic hernia). This meant his diaphragm hadn't closed so the intestines, stomach and bowel were all up in his chest squashing his lungs and heart. He had 50/50 chance of survival. Because of this we were told he would need to be born at The Royal Victoria Infirmary (RVI) in Newcastle – 90 miles from our home in Whitehaven, Cumbria - as he required specialist care. We obviously didn’t hesitate, as all we could think about was finding the best care for our baby, but we had no way of knowing how we would cope as we lived more than three hours away. Thankfully when we arrived at the hospital the staff in the special care ward told us about The Sick Children’s Trust and its Crawford House, a ‘Home from Home’ for families of sick children being treated in hospital. When we looked around Crawford House we really couldn’t believe it. It was amazing, a homely place so near to our baby’s ward, right in the hospital grounds. We were able to stay at Crawford House from the day Lucas was born on 24 September 2012 which meant that our two other children, who were 16 years old and 19 years old, were also able to stay with us when they could. This was the most important thing for us – keeping our family together. We even took Lucas over to Crawford House when he was still on his oxygen three weeks after he was born, so that we could be a whole family together - it was lovely. Staying at Crawford House meant that we could stay with Lucas, look after him and provide care such as swabbing his mouth with milk every few hours, washing him, changing his nappies and giving physiotherapy to his limbs even though he was paralysed and sedated; things you take for granted. One of the aspects of the house which gave me the most comfort was that they had phones in the rooms with a direct line to the wards. This gave us peace of mind as occasionally the ward did call us with updates on Lucas’s condition. It helped reassure us to know that if we were needed or had any questions we could be across to the ward in a few minutes. Staying at Crawford House meant we were able to talk to other families in the same situation. This was comforting; we could all have a cry and a laugh together. The facilities for cooking our meals were all provided and we had our own cupboards and fridge and freezer space. This meant when our extended family came to visit we were able to offer them a drink and some food and relax in the living room with them before their journey home. We were even given practical help with things like hairdryers and change for the washing machines. Having a place to call home away from the hospital but close enough to be there in one minute if needed was the best thing ever. When we needed the charity’s help they were there – everyone from the cleaners to the house staff were so helpful during our month long stay. Now Lucas is nine months he is weaning off his oxygen and no longer on medication. He has just had an x-ray of his chest and his left lung is still small but his right lung is doing fine, which is a great relief. We still visit the RVI every few months and the last time we were there we stopped by Crawford House and handed over an amount of money raised by Lucas`s sister from her sky dive. It makes us feel good that we can give something back and raise funds so that the charity can spend it on providing for other families like ours who need help. We will never forget all that Crawford House did for us to keep our family together and so near to our new addition to the family, Lucas. Amanda Sharpe, Lucas’ mum