My title Elizabeth’s Illness – Elizabeth's Footprint

Elizabeth’s Illness

WP_20150719_006 (2)Elizabeth was a very fit, active and healthy child but on the morning of Sunday 22nd November last that was to change. It was clear that morning that she was ill – we took her to A&E at 8:45am and they quickly confirmed by X-ray that she had acute Pneumonia. This was a shock to us as she had appeared to be in reasonable health the previous day when we visited Bristol Museum and Father Christmas in his ice palace at a shopping centre.

A precautionary move in an ambulance from Cheltenham A&E to Gloucester Hospital with a doctor onboard was followed by a further deterioration in her condition, and within a short while she was in intensive care.

Her condition continued to worsen to the point that she could no longer breathe and an emergency team from the Paediatric Intensive Care Unit at Bristol’s Children’s Hospital were called. The handover was taking longer than expected, the lady doctor in charge of the team told us that they would do everything they could to save Elizabeth.

For first time we realised that things were getting desperate – our daughter’s life was slipping away. Elizabeth was not expected to survive the journey in the ambulance to Bristol, but she did.

WP_20151122_12_17_55_ProMany hours passed of frantic activity by doctors and nurses trying to stabilise her condition. Subsequently, we were told that her condition was likely to be HLH (hemophagocytic lymphohistiocytosis), a very rare condition that meant her body’s own immune system had effectively attacked itself and destroyed her organs in the process. She was so ill that her body had shut down the blood supply to everything apart from her heart and brain, cutting off the supply to other organs and her limbs with dreadful consequences.

For eighteen days, Elizabeth remained unconscious and in a critical condition in the Intensive Care Unit. The doctors and nurses were outstanding and relentless, trying everything they could to save her. A consultant sat us in a room and said what we were going through was inhumane for a parent – it certainly was. The nursing staff demonstrated so much care and compassion for Elizabeth that I could not have improved on their efforts myself.

The events in Paris shortly before Elizabeth’s illness, showed us humanity at its worse, but the doctors and nurses at Bristol Children’s Hospital show us humanity at its best.

Sadly, even the very best care could not save her life – she died on the evening of the 10th December. The machines were turned off and a kind nurse who had been in the original rescue team sent to Gloucester, carefully removed the many cannulas and tubes from her body, and then helped me to wash Elizabeth’s hair for the final time ….

Natalia Spencer, January 2016

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