Thursday, 30 June 2011
Our daughter Issey was born in March 2010, four weeks early. At the time everything appeared to be fine, she was doing very well and we were extremely proud parents.
At about six weeks old our health visitor came for a routine visit to our house in Norwich and noticed that her breathing was a little heavy and asked us to book an appointment with the doctor immediately. Although concerned, we just thought that Issey had a cold and she had mucus that she could not disperse.
However, after seeing her, the doctor referred Issey for an appointment at the local hospital for some very thorough examinations. It was at this appointment that our world fell apart.
There we were told that our daughter had a hole in her heart and she was referred to cardiac specialists at Great Ormond Street Hospital. Within a month we found ourselves on our way to London so that Issey could undergo her pre-operation assessment before the big operation the following day.
That night, the hospital put us up in a hotel so that we could all be together, but after that they told us that they could only accommodate my wife Louise who could stay with Issey until she came home. I was left to find alternative accommodation. This was something that had never crossed our minds. I guess we just hoped that we would find something close by where we could all be together. I did not account for not only the emotional strain of the thought of being separated from my daughter and wife during an extremely stressful time but also the financial cost of staying at a hotel or bed and breakfast in central London.
Thankfully we were put in contact with The Sick Children’s Trust and its ‘Home from Home’ Rainbow House which is situated just round the corner from the hospital. They had a room that was available so the both Louise and I could be together whilst Issey was being cared for in hospital. Sandra the house manager was so understanding, helpful and considerate to our situation and she took a big pressure off us.
Being at Rainbow House meant we could focus on spending time with our daughter whilst being together through those initial difficult days after Issey’s operation. The house was very comforting with all mod-cons and was always clean and tidy and, given the circumstances, was a lovely, warm place to be.
The fact that we were given our own key so that we could come and go as we pleased was a blessing as it meant we could spend as much time as we wanted at the hospital with our little girl.
I cannot thank The Sick Children’s Trust enough. They were there when we needed them most and without them I do not think we would have coped as parents. I had never heard of The Sick Children’s Trust before and I guess that I probably would not have heard of them today if Issey had not been ill. However, having experienced what they do I can only reiterate what a worthwhile charity it is because what they offer to families at a very difficult time is so, so important.
Issey’s operation was a complete success and while she will be monitored for the rest of life, it’s like having a new baby home with us - she is now developing like a normal six month old. We are so grateful to all concerned in helping her on the road to recovery, including The Sick Children’s Trust.
Mark Carpenter, Issey’s dad
Wednesday, 15 June 2011
At the beginning of January 2011, our baby daughter Sophie was rushed to Leeds General Infirmary (LGI) from our home in Doncaster via an Embrace baby ambulance.
At that time all the doctors could tell us was that her body had started shutting down and we were going to LGI cardiac intensive care as her heart was beating too fast and Sophie was at risk of dying. Over the next week Sophie got stronger but still the doctors could not pinpoint the cause of her sickness. After numerous scans it was found that Sophie had a blocked bowel and would require surgery.
During this time we stayed at The Sick Children’s Trust’s Eckersley House right across the road from the hospital. Before this we had never heard of the charity, but for the next month they played an integral part in our lives and the recovery of my daughter.
With the help of Eckersley House we were able to be at her bedside at all times to care for Sophie and bond with her as she was still only weeks old. The house also helped us to have a bit of stability and order during such a hectic period and cut down dramatically on the need for the 80 mile round trip every day.
Also it gave us a space to relax a bit, in the knowledge we were only a phone call and minutes away from the ward. The house manager, Jane, and her staff were understanding and always helpful and there to give advice and above all there to listen and talk about our situation. I cannot praise them enough for their kindness and the way we were looked after.
Meeting other parents in the house in similar situations and being able to talk to them about their child and their treatments was a source of encouragement and something we drew strength from in those early dark days when we didn’t know what the future held. Thankfully though, Sophie’s surgery went well and the medical team was happy with how it had gone.
Sophie is making excellent progress and is now out of any danger and has told us to treat her the same as a normal baby from now onwards. I can’t express enough my gratitude for this wonderful charity and everything they did for me and my family. It was not the best way to start the new year but thanks to the support of The Sick Children’s Trust things are starting to look up already.
By Ian Jepson, Sophie’s dad