As told by her parents Andrew and Carla:
In June 1992 our daughter Chloe was born and we were sadly told her first breath would be her last, however, our very special little girl defied all the odds and lived a very happy and content life for seventeen and a half years.
Chloe was born with very complex medical needs and she was diagnosed with, hydrocephalus and cerebral palsy which meant that she couldn’t walk or talk; she had shunts and was gastrostomy fed. Our lives consisted of numerous visits to Pinderfields Hospital in Wakefield and Leeds General Infirmary which lasted anything from a day up to a six month visit and included in the region of around 100 operations along the way.
In October 2009 Chloe went into hospital with a blocked shunt (a shunt removes pressure on the brain by allowing fluid to move from one area to another), she had several operations and visits to intensive care to try and correct this and just before Christmas her consultant told us that there was only one operation left for Chloe. We were told that it would be a pioneering operation meaning she would be free from shunts however; there was only a 20% chance she would survive.
I remember the heavy snow showers in January and it was touch and go whether the surgeon and his team would make it into theatre that day, but they didn’t let us down. The operation was long, and Chloe went from theatre to intensive care. As I mentioned the operation was experimental, and was something our surgeon had read about in Africa where records were not generally kept, and from the paper he read it wasn’t known if the patients had survived.
The early signs looked good and I can remember the day Chloe moved back to the ward, she had the perfect day, all her numbers on the medical apparatus were perfect and for the first time in four months we were starting to think about taking Chloe home.
We never took anything for granted though as we knew things could change in an instant with Chloe’s condition and we had experienced this before. We always knew her weakness was her chest, and maybe due to the number of anaesthetics over a short period of time her breathing became wet and erratic. The Doctors tried for twenty four hours to control her breathing, but nothing worked.
In the end we were given the news every parent dreads that there wasn’t any further treatment for Chloe and in their opinion they thought her end of life would be very soon. We were given the option for Chloe’s end of life care to take place at home, in hospital or at Bluebell Wood. Previously we had always said Chloe would fall to sleep at home. I can’t tell you why but both my wife and I said we wanted Chloe’s final days to be at Bluebell Wood, which is strange when you consider we had never set foot there and only one of the staff knew Chloe.
We arrived at Bluebell Wood at 2:00am and there was snow on the ground, I vividly remember falling in the car park, but my main memory was the warm welcome on a cold night from the staff who had never met us before. I have to say that this was possibly one of the best decisions we have ever made, and Chloe’s passing was a perfect ending to her special life. What’s strange is how relaxed Bluebell Wood made us feel and how the staff helped us in our time of need.
Whilst at the hospice we met families that were staying there for respite care with their children and siblings. It was here that I thought how lovely an environment it was and wished that we had used the services with Chloe for respite.
We can never repay Bluebell Wood for the love and care they showed Chloe, my family, friends and us. Since Chloe’s death we have formed a connection with Bluebell Wood with Carla getting involved in the ITV programme “Love Your Garden” and I have joined the board of Trustees in the summer of 2012.