This story is about our daughter and the fateful day in 2014 which changed the course of our life (writes mum Michelle).
Erin, who had just turned five, and our seven-year-old son Jack had both come home from school with flu-like symptoms, a fever, lethargy and a runny nose. We dosed them both up and put them to bed, and monitored throughout the night, believing that as it was ‘flu season’, we had been hit hard.
The following morning, Erin woke and was unable to walk or talk properly, so we took her straight to hospital thinking she’d had some sort of stroke. On admission to the emergency department, she very quickly deteriorated, and we were admitted to be monitored and for further testing.
Late that night, she started vomiting and having uncontrollable seizures. Her paediatrician suspected acute disseminated encephalomyelitis (also known as ADEM), and we were whisked by ambulance from our local hospital to the children’s hospital for an MRI and to be admitted to the ICU, where Erin was placed in an induced coma.
The next few days were a complete blur. As a parent, it is horrible watching your child be kept alive by machines, not knowing if you’ll ever get the opportunity to see her smile again or tell her all the things you needed to say, while trying to remain positive that everything will be okay.
The diagnosis was confirmed as ADEM and cerebellitis secondary to influenza A virus. Without the quick thinking of her paediatrician at our local hospital, we would have lost her.
Erin was eventually taken off life support and allowed to breathe and recover on her own terms. When she opened her eyes and gave us a big smile, the relief we both felt was overwhelming.
But we knew we were not out of the woods just yet, and so begun the next phase, working out how to get her better (if she was going to actually get better).
We were moved to a high-dependency ward and Erin began daily physio, speech and occupational therapy as well as having more neurological tests each day.
Thankfully our daughter is born of stubborn genes, and the pride we felt watching her determination and stubbornness as she learnt to walk, talk, eat, and go to the toilet ON HER OWN can never be topped.
We had the choice of staying in hospital to complete Erin’s rehab or bringing her home to work daily with our local hospital on Erin’s rehab. We chose to come home so that our family could resume some normality, or the new normal as we called it.
Erin returned to school part-time after ten weeks, and although she had to repeat her first year of school has made a complete physical recovery and is now progressing well. There are a few cognitive and minor fine motor issues which we continue to deal with and which are monitored through the brain injury clinic at the children’s hospital, but anyone who meets Erin for the first time would have no idea of the ordeal her little body has been through over the past three-and-a-half years.
To say we’re proud is an understatement. Although we would not wish this nightmare on our worst enemies, working with Erin through all of this has bought our family closer together, and we know we are stronger mentally, emotionally and physically because of the events of 31 July 2014.
It has also given us the opportunity to reassess the important things in life and to embrace every opportunity thrown our way every day, as well as to be thankful and grateful for what we have as you never know when circumstance may take that away.
Although there were many days when we collapsed in a corner crying and feeling sorry for ourselves, we dusted ourselves off and thanked our lucky stars that we were one of the lucky families given a second chance.
This has been Erin’s journey. As for me, her dad and brother, the three of us have simply been passengers on her road to recovery and none of us have any doubt she’ll go on to do great things.
Find more information about acute disseminated encephalomyelitis in children here.
