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In loving memory of Ella Freya Phillips, born 13th August 2004.
'Ella Bella Biscuit', ' Fairygirl'

Ella's story by her mum and dad, Beverley and Gary Phillips.

Just a few short weeks after Ella was born she was diagnosed with Tetrology of Fallot. (four defects of the heart)
She underwent her first heart surgery at Alder Hey Childrens Hospital when she was just 7 weeks old.

In January 2007 when Ella was two, she had open heart surgery at Alder Hey to correct the Tetrology of Fallot. The surgery was a complete success. We always knew there would be future operations but the worst was over.

After the corrective surgery Ella led a full and happy life, she did not let her condition hold her back. We worried constantly about her but with time everyone could see she was a fighter & she did very well in school and was a conscientious student. Her brother Aiden who is nine months her junior was like her twin but Ella was the dominant one & the boss. They were rarely apart & shared so much together. Ella also has an older sister Natalie who adored her.

In February 2015 we moved from Cheshire to North Wales and we could not have been happier. 
Ella and Aiden attended Ysgol Carrog primary school and they made lots of new friends. The lifestyle in Wales allowed Ella and Aiden to bloom and develop as individuals and their confidence was at an all time high. We all said how lucky we were to live in this beautiful place and we bought a house that the children could live in for as long as they wanted & never have to move out.

In September 2015 Ella started high school at Ysgol Dinas Bran Llangollen, she really enjoyed school and she soon settled into the new routine. She was having a great time meeting new friends & her sense of humor was on overdrive & she was flourishing. It was time to let go & unwrap some of the cotton wool Ella had always been wrapped in and prepare ourselves for the teenage years.

During the latter part of September and throughout October,  Ella had been complaining of various aches and pains, mainly in her legs and joints. Several visits to the doctors and blood tests indicated that Ella had a non specific infection. We put it down to growing pains or glandular fever, Ella was not 'that' ill. Her appetite was now poor but her routine appointment for her heart check came through & we thought we could hold out for that as we knew her heart would not stay perfect forever & it could be that it needed another fix.

On Wednesday October 28th 2015 Ella attended Leighton Hospital for an annual check up with her paediatric cardiac consultant. 
Her heart scan was normal and the 2016 appointment was scheduled. Her recent aches & pains and the blood results were discussed but they were not thought to be anything to be overly concerned about.

The following evening Ella was feeling unwell, she was complaining of feeling nauseous and had a headache. During the night this developed into vomiting and headache with a slight rise in temperature. Thinking that she may have picked up a bug during the hospital visit,  we treated her symptoms with calpol and nurofen.

At 10:30am on Friday 30th October Ella was seen at our local heath centre. In addition to the vomiting, headache and temperature, Ella was now complaining of a pain in her neck and intermittent sudden onset pains to the side of her head.
The nurse suspected meningitis and called for an ambulance to take Ella to Wrexham hospital.

At Wrexham hospital Ella continued to vomit and despite being given pain relief the sudden onset head pains also continued. 
Blood was taken to test for various conditions including meningitis but because there wasn't the rash that normally accompanies meningitis, they decided to wait for the blood results before starting any treatment. Ella was put on a saline drip because she had become dehydrated due to the continued vomiting.

On Friday evening Ella went to sleep with her dad by her side. A short time later she suffered a massive seizure, her dad immediately called for assistance. The crash team found Ella unresponsive and struggling to breath.

Ella was sedated and put on life support, a C.T scan revealed that she had suffered an intracerebral haemorrhage. Due to the severity of her condition, Ella was transfered to Alder Hey.

We arrived at Alder Hey in the early hours of Saturday morning,  Ella was handed over to the team in the critical care unit and remained stable throughout the night.

A detailed 4d heart scan revealed a small cluster of cells around one of Ella's heart valves, this is consistent with a heart infection or bacterial endocarditis.

During the course of Saturday Ella underwent 2 further C.T scans and two brain operations, along with intravenous antibiotics to fight the infection.

It was noted that brain function was impaired and that at best, Ella would be profoundly brain damaged.

After consultation between the cardiac team, the neurology team, the critical care unit consultant and Ella's parents,  the decision was made to withdraw sedation in order to carry out brain stem function tests.

At 8pm on Saturday 31st October the sedation was withdrawn. With her father by her side Ella was kept comfortable and monitored by the critical care team throughout the night.

On Sunday 1st November and with no sedation for over 14 hours, Ella remained unresponsive. The brain stem test confirmed our worst fears and the heartbreaking decision was made that Ella's life support would be withdrawn later that day.

Ella sadly passed away when her life support was withdrawn on Sunday afternoon 1st November 2015.

Her heart, that had concerned us for so long, was stronger than ever and did not fail her. It was however harbouring a bacterial endocarditis around one of the valves. It was this infection that travelled to her brain and caused the haemorrhage. The bacteria that caused this, Streptococcus Viridans is something we all have within us. We have no idea how it got into her blood stream as she had no dental problems or the other common reasons people get this.

As a family we are devastated by the sudden loss of our little princess. The grief is overwhelming and ever-present. All our hopes and dreams for her future life are now gone. This was so sudden, so unexpected & so unlikely a thing to happen to us as a family. However,  amongst our grief there is hope, the hope that together we can all support Alder Hey, so that they can continue to provide the best possible care for all our little princes and princesses.

Thank you for your donation on behalf of Ella Freya Phillips. x

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