Rainbow House kept us together as a family

The Sick Children’s Trust’s Rainbow House or ’Sandra’s House’ as my son, Lucas so fondly calls it is a fantastic facility that unfortunately we only became aware of when our new-born son, Owen was critically ill in hospital.

Owen was born on 21 February at our local William Harvey Hospital weighing a healthy ten pounds and three ounces. After a perfectly normal, albeit speedy labour, we were surprised when nurses whisked Owen away for observation. We presumed that everything was ok and that they just needed to do some standard tests. It felt like the entire world stopped when they came back and told us he was in a critical condition and had a less than 50% chance of survival. They were unable to tell us why Owen was so poorly, just that he needed to be transferred to Great Ormond Street Hospital (GOSH), one of only three centres in the UK that offers the specialist care he needed.

We were devastated and felt so helpless; throughout my pregnancy there were no signs of anything being wrong. We followed Owen to GOSH and didn’t even consider any other practicalities. We had nothing with us apart from the clothes we were wearing and some loose change in our pockets. Lucas, was just two years old at the time but fortunately was able to stay at home in Kent with our family while we rushed to London; we didn’t want him to see how upset we were and thought it was best for him to stay at home.

Luckily, we were given a room in the parents’ accommodation at GOSH which was really helpful as we were near Owen and could be with him at just two minutes’ notice if there was an emergency during the night. This was especially important over the first few days as doctors were still working on Owen’s diagnosis and trialling different treatments; it was decided that he didn’t need to be put on the specialist ECMO machine that supports the heart and lungs, but he was ventilated and given 14 different types of medication. For us, to see our little baby going through so much was really distressing.

After a couple of days, when the situation had calmed down a little, we realised that the best way to cope and get through Owen’s illness was to stay together as a family. We missed Lucas so much and were desperate for him to come and join us in London, however he was unable to stay in the room we had at GOSH.

We spoke to the accommodation services at the hospital and were recommended to Rainbow House, The Sick Children’s Trust’s ‘Home from Home’ located just around the corner from the hospital. We were welcomed into the house by Sandra and given a family room for Matthew, Lucas and I to stay in which was lovely. Not only did we have a bedroom but there was also a kitchen, dining room, lounge, playroom and laundry facilities; it was amazing and became our home for a week.

We spent most of our time on the ward with Owen but it was great to be able to go back to the house for a break, especially for Lucas who loved the playroom full of toys! We cooked all our meals in the house and ate together at the dining table which helped to give us some semblance of normal life. The close proximity was the best part of Rainbow House; we could come and go reassured by the fact that if Owen needed us we could be there in just a five minute walk.

After a week in GOSH, we were told that Owen’s condition was stable enough to be transferred back to our local hospital. Matthew and I were so relieved to know that he was stable and really felt a weight lift off our shoulders knowing that he was on the road to recovery.

At William Harvey Hospital we were greeted by the same nurse who was on duty the night Owen was transferred. Upon seeing Owen and us all together she burst into tears saying she didn’t think she would see him again as his condition was so critical that night. Doctors are still unsure what caused Owen’s condition; they suspect that the quick labour could have been stressful on his body and that he may have had pneumonia, an inflammatory condition of the lungs but we still don’t know for certain. Owen really is our little miracle!

Since leaving Rainbow House we have stayed in touch with Sandra, she came into our lives when we were struggling most and made the biggest difference. Lucas loved her and couldn’t walk past her office without popping his head round to say hello and I honestly feel that we will consider her part of our family for the rest of our lives.

We didn’t know anything about The Sick Children’s Trust before our stay; I had heard of the name and seen the logo but that was the extent of it. Now, I cannot begin to imagine how families cope without it. To have our new-born son in intensive care at a hospital miles from home and be separated from Lucas was a situation we never considered we’d be in and without the help from this wonderful charity I don’t know what we would have done. Rainbow House kept us together as a family which I know helped Owen to recover.

Owen has recovered well and we are looking forward to our first Christmas at home. I tell everyone I meet about The Sick Children’s Trust and cannot praise it highly enough. We took part in the Hyde Park Walk this summer to fundraise for the running costs of Rainbow House, attended the 30^th Anniversary and hope to host our own fundraising evening to mark Owen’s second birthday.

Laura Rice, Owen and Lucas’ Mum