There's Nothing More We Can Do

Almost a month ago today our lives completely changed..hearing the words that no parent should ever hear:

‘There’s nothing more we can do’

Saturday April 12th

Eira woke perfectly normal and had the best morning, at 3pm we were playing jigsaws on the mat, at 4pm we were on our way to A+E as Eira had a temperature of 41.8, she was vomiting and her eyes were rolling to the back of her head, we knew something was seriously wrong, but we didn't know what. The vomiting continued on the journey to hospital and her responsiveness reduced considerably, we were becoming more and more concerned as time went on.

After what seemed like a lifetime in A&E at Glangwili (it was over an hour and a half) we were sent over to PACU (Paediatric Ambulatory Care Unit) where the Doctor present immediately started Eira on fluids and various medications - within a very short space of time, the room was filled with doctors, nurses and other medical personnel who were treating Eira. From around 7pm we had no response from Eira - no words - no tears and no movement! She had several ‘seizures’ through the night that led the doctors to believe there may be some trauma to the brain, although at this stage it was an assumption.

Sunday April 13th 

The doctor was concerned with Eira’s conscious levels and sent Eira for a CT scan. She was sedated and given medications to try and help reduce the seizures she was experiencing. We were moved from the main area of the ward to the High Dependancy Unit so that Eira could have constant one-to-one care and monitoring. From the results of the CT we were advised there was ‘slight swelling’ to the tissue surrounding her brain and that in order for further tests and to ensure the adequate doctors and facilities were on hand we were either being transported to Cardiff UHW or Bristol- in order for Eira to be transported by WATCH (Wales & West Acute Transport for Children),  she had to be vented to assist breathing. We were transported to Cardiff Noah’s arks children’s  hospital intensive care unit where Eira had further treatment, an array of medications and an MRI scan was arranged. 

Monday April 14th 

Phil and I were taken to a private room with the Neurologist and other medical personnel to discuss the results of the MRI. We were told it showed significant swelling of tissue around the brain and that had caused significant injury to her brain. We were told that Eira had a common cold that attacked her immune system in a way that no one could have seen coming, which led to her being diagnosed with acute necrotising encephalitis. In the doctors words ‘we’re not giving up hope but we also need you to prepare that Eira may not make it’.

The next 72 hours were meant to be spent tackling every possible reason for this using an assortment of medications, whilst Eira was being ‘neuro-protected’. This even got as far as liaising with Great Ormond Street Hospital to construct a unique medication specifically for Eira that would tackle the virus directly. This wouldn't be immediate and would take a few days. In the meantime, they were undertaking various tests to rule out things such as meningitis. 

Wednesday April 16th

After undergoing more testing and trials of other medications over the past 24 hours, an EEG (Measures electrical activity of the brain) was conducted using a CFAM (Cerebral Function Analysing Monitor) to identify brain activity and seizures. 

At 10am we were told that all the signs showed that Eira had little to no brain activity and that the medication from Great Ormond Street would arrive shortly and that would be administered around lunchtime to tackle the virus which had now been officially identified as Acute Necrotising Encephalitis.

At 12pm the consultant sat us down and told us that ‘Eira was no longer with us’ and that the ‘machines were keeping her alive’. The decision was made by the consultant to turn off the ventilator at around 3pm and we were advised to gather our families to say goodbye to our little girl as it was ‘almost certain’ she

would be unable to breathe without assistance.

At 3:18pm the ventilator was turned off and all monitoring was stopped. Eira continued to breathe, albeit irregularly. She continued to breathe independently throughout the night, taking long pauses often. With her family around her, it was most definitely the worst night a parent could endure. Her pupils became fixed and although she was unresponsive in herself, she continued to breathe independently throughout the night, with us all by her bedside.

Thursday 17th April

After over 19 hours of watching our daughter fight for her life, and continue to do so, we were offered the opportunity to be transferred to Ty Hafan Children’s Hospice for end of life/ palliative care.

Having only ever heard of Ty Hafan briefly from the experience of others and various sponsor events, we had no idea what to expect. As far as we were concerned at this stage, it was a place that wasn't a hospital where we were taking our daughter to die.

We arrived and immediately felt more comfortable than being in hospital, there was a room set up for Eira, with a Peppa Pig cuddly toy perched on the bed. We were also given accommodation at Ty Hafan known as 'The Flat', although we would both remain at Eira's side in her room for the foreseeable future.

Fast forward to today…

Ty Hafan is an absolutely extraordinary place for children, the environment is nothing like a hospital and every single member of staff goes out of their way to make sure not only Eira, but us as a family are as comfortable as possible whilst Eira is being cared for, we have been able to have Angharad with us throughout our time here, which we would not have been able to do had we remained in hospital.

With just 13% of their funding coming from government sources, they rely heavily on donations from the general public. The care that has been given to Eira so far has been second to none, and we truly believe that if we had remained in hospital, Eira would not be with us anymore.

Eira is still fighting, and making small improvements everyday, going beyond the expectations of doctors and nurses.  There is a long way to go before we can take our Eira home, and when we do, it will be a ‘different’ Eira to who we knew before, but she will still be our Eira and we will embrace what the future holds.

We are fighting her corner with her and are incredibly lucky to say that we still have our Eira with us.

Here are some photos showing Eiras progress over the last 3 weeks...