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Ellie’s Story

Ellie's StoryThis is Ellie. She was born a healthy seven pound fourteen ounces in May 2009 and we had no concerns about her health for the first nineteen months of her life. Then she stopped eating, refused to walk anywhere and started to nap more. We went to see the GP and after three visits, were referred to the Paediatric Assessment Unit at Reading where Ellie was diagnosed with dilated cardiomyopathy – most probably caused by a virus attacking her heart. She was transferred urgently to the JR Hospital in Oxford and we were taken into a room and given the statistics: there was a one in three chance of recovery, a one in three chance of living with her condition on medication and a one in three chance of her not responding to the medication at which point transplantation would be considered.

Ellie responded well to the drugs at first and we took her home after twelve days in hospital. However her appetite never really came back and she soon started going downhill again. We were back and forth to the JR for five weeks and then Ellie’s condition deteriorated rapidly. It was at that point the consultants started mentioning the word ‘transplant’ and told us that they had already been in talks with Great Ormond Street Hospital. They were going to give one drug a try and if that failed, they would need to refer us to the experts at Great Ormond Street.

The medication didn’t work and Ellie got worse. While this was happening we got a call from GOSH. Could Simon and I go to London the following day to discuss the option of transplant? It would mean leaving Ellie in Oxford. The consultants said they couldn’t make that decision for us, but couldn’t guarantee that Ellie would survive while we were away. But if we didn’t go, what if we missed the one chance of a heart? How can any parent make a decision like this?

In the end the decision was taken out of our hands. Ellie’s arms and legs started to go cold, her body was shutting down and first thing the following morning, we were told that Ellie would need to get to GOSH today because her body was very weak. She was then put onto a ventilator and rushed to GOSH. We weren’t allowed in the ambulance so made the trip to London separately, hoping that she would be strong enough to survive the journey.

We arrived at GOSH to find the doctors settling Ellie – she had dealt with the journey well. Within half an hour of arriving, we were taken into a room and met with the transplant team and by the end of that meeting Ellie was on the transplant list. The doctors hoped to keep her stable until a heart became available, but three days later we were told that her condition was too precarious and they would need to fit her with a Berlin Heart – a machine that would perform the function of her heart – as a bridge to transplant. She had the operation the following day.

Then started our wait for a new heart. Ellie recovered from the Berlin Heart operation, gradually got back on her feet and we were transferred out of intensive care. Whilst the Berlin Heart undoubtedly saved her life, she didn’t get on with it too well. She was on medication to thin her blood, but still had to go to theatre six times to have her Berlin Heart chambers changed due to potential clotting. One morning, after being handed a bottle of juice, Ellie couldn’t move her left arm. A blood clot had escaped undetected and had resulted in a stroke which affected the left side of her body. Very fortunately, Ellie started moving her left arm and leg by lunchtime and the family had returned back to the ward after two days of Ellie wreaking havoc in intensive care.

Ellie’s call arrived exactly five months after she was put on the transplant list, and a few weeks after her second birthday. The operation didn’t exactly go according to plan and her chest had to be re-opened when her blood pressure and heart rate plummeted. But after a critical forty-eight hours, all the stats were heading in the right direction. A week after her transplant Ellie was transferred to the ward and on her eighth day she amazed us all by climbing seventy-two steps non-stop, from the second to the fifth floor of the hospital. Later that week, Ellie left the hospital to stay in the hospital’s transplant flats and she was eventually discharged two weeks after her operation.

It is now twenty months since Ellie’s transplant. I would be lying if I said it had been plain sailing. The most significant issue has been a virus that Ellie contracted from the donor heart which attacked her eyes – a first for GOSH apparently! She has also had problems with her immune system which meant it was ten months before she was allowed to start nursery – on the week of her third birthday. But things have been a lot more stable in the last twelve months. Ellie is still here and is full of fun and energy. We have seen her grow and develop and move on from Peppa Pig to princesses, fairies, mermaids, fast roller coasters and Strictly Come Dancing! None of this would have been possible if it hadn’t been for the generosity of our donor family. We thank them every day for giving us back our little girl.

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