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Through all the tears and heartache we have been through we all stick together and continue to smile, for our amazing daughter and little heart warrior

News   •   Dec 21, 2017 10:16 GMT

Little Ellie and older sister Izzy with mum Cara and grandad Martyn

When Ellie was six weeks old, I took her to her routine six week GP appointment at our home in Prudhoe, Northumberland. Straight away I could tell something was wrong because the doctor spent ages listening to Ellie’s heart. She told me that we needed to go straight to the Great North Children’s Hospital at Newcastle’s Royal Victoria Infirmary (RVI). She told me I could take Ellie there myself and that she would ring ahead to let the hospital know she had referred us, and that we needed to be seen immediately. At that moment I realised just how serious the situation was becoming.

The rest of the day passed in a blur. When we first arrived, the doctors took Ellie and rushed her away from me to carry out tests. It wasn’t long before they told my mum, Nicola, and I that they were consulting with Freeman Hospital – a hospital not far from the RVI which specialises in paediatric heart conditions. And that’s when the panic really started to set in. Luckily my mum was there to comfort me, but I was a total mess. I didn’t know what was going on and desperately wanted to help my little girl. Hours passed, Ellie’s dad Louis arrived, and there was still no news. Then, in the middle of the night we were told that there was something wrong with Ellie’s heart and she needed to be urgently transferred to Freeman Hospital.

The cardiologist met us upon arrival and performed an echocardiogram, a sonogram that creates a model of the heart. We were then taken into the parents’ room and told the devastating news that Ellie’s heart wasn’t working properly and that she was suffering from a congenital heart condition called hypoplastic right heart syndrome – a rare condition in which the right side of the heart hasn’t developed properly and so cannot function effectively.

The initial prognosis was grim, palliative care was described to us as the doctors didn't think there was much they could do to help our precious daughter, but they would try and make Ellie as comfortable as possible. But the likelihood was that she would be spending the next days or weeks in hospital – where they could do that for her.

Being told your six week old baby needs palliative care is earth shattering. You are helpless. And all you can do is just hope, with all your heart that a doctor will come along with some good news. A new intervention, a chance of life. Luckily, the next day a scan showed a way that could save Ellie’s life by performing a complex surgery. But Ellie needed to grow stronger for that to happen and at this point it was looking unlikely as she was very unstable. Things didn't really go to plan – they couldn’t wait for our daughter to get stronger as on our second day at Freeman Hospital, Ellie took a major turn for the worse and there was no option but to rush her into surgery. I didn't even really get to say goodbye to her properly – it was a quick kiss on the forehead as they rushed her down the corridor for her first open heart surgery. As Louis and I watched Ellie disappear we didn’t know if we would see her again.

Ellie would be recovering from the operation on the paediatric intensive care unit (PICU), but we were told because it was PICU we wouldn't be able to stop and sleep with her, although we could sit with her for as long as we wanted. I felt the panic rise in me once more. I couldn't drive and didn't know how I would be able to stay close to my daughter as much as I wanted. That is when we found out about The Sick Children’s Trust. We were told there was a place where we could stay, totally free of charge, just a few minutes from Ellie’s bedside. I can’t describe in words how eternally grateful we are to such a fantastic cause.

Ellie spent the bulk of her first year in hospital and Scott House allowed both myself and Louis to be as close to her as possible. It also created a home away from home because it meant Ellie's older sister Izzy could come and stop and visit us and Ellie, but not always be stuck in a hospital room. She absolutely loved the playroom at Scott House (she thought it was a soft play) and gave us a much needed place to relax as much as we possibly could, try and get a good night’s sleep and a quick shower whenever we wanted.

The staff at Scott House are absolutely amazing, especially the manager Andrew. Even when we are at clinic and walk past him in the corridor he will always stop to ask how Ellie is doing. He truly is an amazing guy and always smiling; he will let us vent if needed about the good and bad things and in those early days he would to us if Ellie was being a little naughty and not doing what we wanted (which was more often than not!).

Scott House also provided a place where we could meet and talk to other families going through similar experiences, which was a real comfort. Unfortunately due to Ellie's conditions, her treatment still is classed as palliative. However, the future is hopefully not too grim for us, with either more open heart surgeries to try and "correct" her circulation or possibly a heart transplant. She will always have regular trips to hospital and future surgeries etc.

So far we have had four open heart surgeries, and Ellie has had numerous cardiac catheters and other procedures. All her treatment has been performed at Freeman Hospital with Scott House on standby for us every time. Currently Ellie is the best she's ever been, and we are all looking forward to spending this Christmas together as a family at our house with both my parents and one of my five brothers, Jack.

Last year was our first Christmas at home as a family, but we were on tenterhooks because it had been a really rough year, but now that Izzy is three and Ellie is two and a half, we are going all out and have a lovely Christmas tree. Izzy cannot wait for Santa to visit and I am sure I will have to stop her opening all of Ellie’s presents as well as her own. We even have a present under the tree for our one year old French Bulldog, Reggie.

Ellie is slightly delayed developmentally, but considering everything she has been through she is thriving and loves life to the most. To us she is the happiest little girl in the world. She has the cheekiest personality and is loving being home for a period of time, enjoying normal life with her family and of course playing with her big sister and very best friend, Reggie.

Cara Large, Ellie’s mum.

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