Our son, Roman was born 24 weeks and
four days prematurely on the 19th February weighing a tiny one pound
and twelve ounces. My partner, Nick and I were in complete shock, Roman is our
first child and his early arrival was so unexpected.
We were told that the care Roman needed wasn’t available in Southend Hospital where he was born so he was immediately transferred to the neo-natal intensive care ward at The Royal London Hospital in East London. It was heart-breaking seeing Roman being whisked away to another hospital, not knowing what was going to happen.
Nick and I got some things together and travelled up to London the next morning and after many tests and scans Roman was diagnosed with chronic lung disease, a bleed on the brain and also an open duct in his heart. Nick and I couldn’t even begin to comprehend that he had so many problems especially as he was so tiny. We were both really frightened and it dawned on us that we couldn’t stay on the ward with Roman but we didn’t want to travel all the way home either as we couldn’t bear to be that far away.
It was when we started to discuss finding a hotel that a lady who works on the reception on Roman’s ward came up to us and handed us a pair of keys; she told us that there was a room for us in The Sick Children’s Trust’s Stevenson House, located just around the corner from the hospital. We were so relieved when we realised that we didn’t have to leave Roman and so grateful to have somewhere to get some much needed rest; the previous 24 hours had thrown us on to what seemed to be a non-stop rollercoaster and we were both exhausted.
Stevenson House was everything we could have hoped for and enabled us to spend all our time with Roman. The close proximity of the house meant we could pop back to get some food or just five minutes break and it was reassuring to know that if there was an emergency or Roman needed us then the nurses could call directly through to the phone in our room.
I couldn’t go to work while Roman was in hospital as I couldn’t bear to be away from him but luckily Stevenson House had internet access which meant that Nick could work from the house and spend lots of time with Roman too. We are fortunate that he could do this as it was so important for us both to be there for Roman and bond with him. It was also such a support to have each other to turn to especially on days when Roman was very poorly and facing surgery. Without each other and the other families staying in the house to talk to, I don’t know how we would have coped.
We had lots of family and friends come to visit Roman and while he was in intensive care he wasn’t allowed visitors so it was great to be able to take them back to Stevenson House. It was nice to have a chat in a calming and homely environment without the constant humming of medical equipment in the background. Our parents brought us lots of home-made meals when they came to visit which was perfect for us as we could just heat them up quickly in the microwave and go straight back to the hospital.
Roman had to have several treatments while he was in hospital including several blood transfusions, heart scans and brain scans; every day seemed to present a new challenge. Roman also had to visit Great Ormond Street Hospital for appointments and to have surgery for the open duct in his heart.
While we were in Stevenson House, the house staff held a Big Chocolate Tea Party and volunteers from the charity’s corporate supporter, Zurich cooked a meal for us. It was a lovely opportunity for the families staying to get together and some families who had left also came back. To hear everyone’s stories and positive endings really helped to lift our spirits and look forward to the time when we could take Roman home. We met some lovely families and have stayed in touch with two who are now, our very good friends.
Roman finally came home on the 11th June after a long 16 weeks spent in The Royal London Hospital and our local Southend Hospital. His little personality is coming out now and he brightens up every room. He is still on oxygen and has lots of follow-up appointments to go to but it is amazing to just have him home with us. Spending so much time at the hospital with Roman meant that we were able to learn about the essential day to day care he needed and it really helped to increase our confidence about taking him home. We are getting to grips with the sleepless nights now and couldn’t be happier to have our little Roman at home.
We cannot thank The Sick Children’s Trust enough for their support, the accommodation they provide is simply amazing and without it, Nick and I would have been faced with long distressing journeys home or expensive hotel bills. We will never forget about Stevenson House and hope to stay in touch with the staff who have been there for us since the beginning of Roman’s journey.
Hayley Pleasant, Roman’s mum