Little Grace

By Damian Slack. Grace's dad.

My partner, Tina, and I stayed at The Sick Children’s Trust’s Guilford Street House for nearly a month (from April 25 to May 24, 2010) whilst our daughter Grace was being treated at Great Ormond Street Hospital (GOSH). She was just 14 months old.

Grace was initially based at our local hospital, Hillingdon Hospital in Uxbridge, with a preliminary diagnosis of pneumonia and a heart murmur. But in less than 24 hours she began to deteriorate so badly that she had to be transferred to GOSH where she underwent emergency surgery to replace her aortic valve and repair her mitral and pulmonary valves.

During surgery, further complications arose and after a seven and a half hour operation Grace was returned to intensive care in a very poorly condition, so poorly in fact that further emergency surgery was conducted in the Cardiac Intensive Care Unit (CICU). She would remain on this ward for an additional three days with her chest open to aid the swelling and reduce the pressure on her heart.

During this time, all my partner and I could think about was Grace. Our state of mind, as you can imagine, was all over the place and the last thing we wanted to do was leave Grace for even one moment – especially with her being in such a fragile state.

We heard about The Sick Children’s Trust through the accommodation department at GOSH. As Grace was in CICU we were unable to remain with her during the operation, ward rounds, evenings and nights and staying at Guilford Street was an important part of our time in the hospital. It gave us a stable base where we could discuss the events of the day and be together through what we both agree was the hardest time in our lives.

Allowing Tina and me to stay together meant we were able to be there for Grace, knowing that at any point the ward could call us on the room phone or our mobiles and we could be by her side in moments. We were so close to the hospital, we were able to go back for the observations and medications every two hours but also had the normality of being in a house.

One of the best things about having the ‘Home from Home’ at Guilford Street was when we wanted to bring our other children up to visit Grace. We would all meet at the house initially where we would sit down in the lounge and prepare the children for visiting their sister for the first time. This allowed us the opportunity to explain to them what all the machines and tubes were prior to them seeing her.

Another positive from being in the house is that every person staying there has a story to tell and is also at differing stages of treatment/progress during their stay. We met a few families, some of whom helped us get through the long nights of waiting by chatting together over a cup of tea or watching television in the lounge.

There was one family in particular that we became close to, Phil and Tony, who have a 17 month old daughter with leukaemia. In fact, we became such good friends and went through a lot together that they have asked us to be their daughter’s godparents when this is all over.

One of our main dreams from day one in the house, after seeing the children’s breakfast bar in the kitchen, the lounge and the playroom with all the toys, was to bring Grace back to the house and enjoy them. Towards the end of the last week, this was something we found great comfort in.

Our house manager was also fantastic and genuinely cared. Tina knew all of the families’ and children’s names and the condition they were suffering and would regularly ask for updates and had a good ear for listening. She always would make time for a chat and was a dab hand at making the tea while we were back at the house doing washing or waiting for Grace to wake up.

Grace has now been diagnosed with Takayasu's arteritis – an inflammatory disease with unknown causes – and is looking to spend a long while yet recovering. With many more visits to Great Ormond Street Hospital in the pipeline, it is reassuring to know that Guilford Street house will be there to support us should we need it.