Our time at Treetop House by Marie Boden, Jayden’s mum

Our son Jayden was born in Rotherham in November 2010 with cystic fibrosis. Further testing with an X-ray revealed that he had a blockage in his bowels, so he was transferred immediately to Sheffield Children’s Hospital and at only five days old he had to have an operation.

After this everything seemed to be okay, but then he started losing weight rapidly and at the start of February 2011 we had to take him back to hospital for a week to undergo tests. He was released for the weekend and we were hopeful that he had turned a corner but then he took a turn for the worse and was readmitted for more tests. We were on the ward for two weeks before the doctors told me it would be a long term stay. It was at this appointment that the consultant mentioned The Sick Children’s Trust and its ‘Homes from Home’, as it became clear that this time we were going to be in hospital for quite a while.

Before we got a room at Treetop House we were travelling back and forth from our home in Rotherham, which was half an hour each way, and with neither myself nor my partner being able to drive, we had to use public transport. This isn’t ideal when you have a sick child and every second counts. We just wanted to be close to Jayden all the time.

The first week Jayden was on the ward, when we didn’t have anywhere to stay, we were going back and forth to do our washing. We were just rushing into our home, tidying and putting a quick wash on with enough to keep us going for a few days before going straight back to the hospital. Eating out was also proving expensive. We didn’t want to stay at home and make meals as being by Jayden’s side was our priority, so we would grab a quick snack from the hospital canteen just to keep us going. All these little things added to the stress of what we were already going through, but once we found accommodation at Treetop House these were no longer an issue. It’s these little touches that make such a difference.

Staying at the house not only helped us to physically stay close to Jayden but also mentally gave us peace of mind. When we were staying there we used the phones in the rooms to keep in touch with the ward and would often call down just to check on his progress and make sure he was doing okay.

In the last few weeks Jayden also came and stayed with us in the house and although he is too young to take advantage of the play room or even watch TV, I can’t tell you how wonderful it felt to be like a normal family. As Jayden got ill pretty much straight away after he was born, we haven’t had the chance to do “normal” family things like cook a meal together or just sit in the room and play with toys. The Sick Children’s Trust provided us with a place to do that and really helped us all bond together as a family – I think spending this type of quality time together also helped Jayden to recover quicker, as it is so much better being close to one another. I am sure having us around and being away from the wards gave him strength to get through his illness quicker.

My mum and dad also came for a visit as they were desperate to meet their first grandchild. It was so just so lovely to be able to sit in the lounge at the house and relax with a cup of tea and talk to mum and dad and let them sit and cuddle Jayden without all the noises of the ward going on in the background. As well as having our own family around us, meeting other families also helped as it was reassuring to know we were all going through the same situation. We could draw on each other’s strengths and support each other through the good times and the bad.
We’d never been to Sheffield before and coming from Rotherham was quite disorientating. The house managers were wonderful in helping us adjust to our new situation and letting us know where all the shops were, which we would never have had time to find on our own.

We have just left the house and are going home for the first time which is very exciting for us. We will have to come back every week for a check up for the rest of Jayden’s life but thankfully it should only be for a day visit. I can’t thank The Sick Children’s Trust enough for its support during this time.