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