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25/04/2019

As good as it gets?

By Emily Marsden

At around this time last year our 4-year-old daughter, Daisy was admitted to the local children’s ward. We had no idea at the time that it would be over five months until Daisy would finally return home. Her seizures had been increasingly more difficult to manage and it was becoming normal to disappear off in an ambulance in the middle of the night when the seizures just wouldn’t stop.

Often Daisy’s seizures would not respond to the usual rescue medication and this regularly resulted in her being sedated through an intravenous drip. She would then sleep for a day or two only for the whole cycle to start again when she woke. This continued for months. We took it in turns staying at the hospital as we hated the idea of her waking up and neither of us being there, or the seizures starting again and a doctor being on shift that didn’t know Daisy and her complicated seizure protocol. After trying countless medication combinations, things were not improving and it all began to feel completely hopeless.

One morning, following a night of particularly bad seizures, the ward consultant took me to one side and told me quite frankly that it was time we began to accept that this was, ‘as good as it gets’. I always dread any professional saying this but he followed it up with, “we need to remember that she does have Rett Syndrome”. At the time I was so tired and unable to think clearly, I didn’t respond and started to believe he was probably right. Later that week after a professionals meeting and some encouragement from Daisy’s community team we transferred Daisy to Birmingham Children’s Hospital in the hope that they might have some new ideas.

When Daisy and I arrived on the new ward it was loud, busy and full of very poorly looking children. I remember trying to sleep on the hospital camp bed that night; I was heavily pregnant and we were in the midst of a heatwave. The emergency alarm went off several times throughout the night and a four month old baby opposite us stopped breathing and turned blue. I lay awake all night, thinking things just couldn’t get much worse. I decided that in the morning I was going to discharge Daisy and try to manage things at home as she was never going to get better somewhere like that. But when the neurology consultant came round to meet us I realised the negative approach from the previous ward was not shared. “Give us a few weeks” he said, “we can get her better than this”. He then told me to go home and get some sleep.

After 5 months and lots of experiments with different treatment plans, Daisy did get better. She has been free of any major seizures for 8 months and earlier this year she started school. In the Rett Syndrome community we are so used to hearing about deterioration and sometimes, tragically, other people’s children passing away too soon. When a doctor suggested Daisy may not get any better I was resigned to that idea. Today, Daisy’s health remains fragile and trips to hospital are still fairly frequent, but we are so grateful to have Daisy at home and to see glimpses of how Daisy was before debilitating seizures took hold of her.

I wrote last year about the hope I hold in research and how I am unable to accept the idea that we just continue with things the way they are. I still firmly believe now, more than ever, that the greatest hope I have in Daisy leading a longer and healthier life is through advances in research. I am sure many other parents have experienced medical professionals taking a narrow and pessimistic approach to treating and managing some of the difficult symptoms associated with Rett Syndrome and this needs to change.

Reverse Rett have been campaigning for years about finding a cure for Rett Syndrome, and ultimately this is what I hope for; we are getting closer. But of equal importance is the growth of research that is supporting trials into improving the health and quality of life of those living with Rett Syndrome.

I am sure that in years to come, whether we have a cure or not, the outlook will look brighter than it does today. Reverse Rett are more than just a charity in a quest for a cure and the work they are carrying out is only possible if families like ours continue to support them. There is no quick fix in changing the mindset of doctors like the one who had given up on Daisy, but I continue to believe that Reverse Rett are leading the way to a more progressive and optimistic future for all of those living with the complicated, challenging life that Rett Syndrome brings.