This is Faith – she is five and three quarters and she loves rainbows and unicorns, Hama beads, her friends at school and jumping in the deep end!
Back in January 2015 all our hopes for her future were snatched away when she was diagnosed with infantile spasms. In retrospect we were lucky in many respects – we quickly got clear video footage of the movements she was doing and she had a classic spasm cluster, we had doctors within our family who recognised what was happening and told us to take her to A+E, and our local hospital is the regional epilepsy centre. Within 12 hours of presenting at Bristol Children’s Hospital she had an EEG showing the classic chaotic brainwave pattern, was diagnosed and started steroid treatment.
I have never felt so lonely as that first weekend in hospital. We were given a bed on the renal ward as there was no space in neurology, so we saw very little of anyone who could answer questions. My husband had to return home to look after our older children, and as it was the weekend I couldn’t even get hospital wifi. A family member found us the Quarriers patient leaflet which only succeeded in scaring us even more, particularly with the (untrue) statistic that 20% of children with IS would not reach their fifth birthday. The teenager opposite us watched telly far too loudly late into the night, on a channel that at every ad break showed a Specsavers advert with a heart monitor that went from regular beeping to a long tone. Every time, it would rouse me from my chair in a panic to check the monitors attached to my daughter.
Things didn’t improve much when we were allowed home – it is a completely miserable experience caring for a child on high doses of steroids – they are starving and can’t sleep, the smiles disappear and are replaced by moaning, and they are immunosuppressed so you have to isolate yourself to protect them from infection. With access to the internet again of course we googled relentlessly and found nothing but doom and gloom. The one bright spot was that we found an online group for parents based in the USA where we felt supported. It is so hard to believe when you are in the middle of it that things will ever get better – what if the changes you are seeing are the disease and not the treatment?
In the end we did ten long trying weeks on steroids, because the first time we tried to wean off the spasms came back. In that time and the months after we had countless hospital appointments and tests looking for an underlying cause. Faith’s development had regressed during spasms and then stalled during treatment, so at a year old she was only at a six-month level. When we felt able to start taking her back to baby groups she was massively behind her peers.
The next stage is where our experience in the UK differed vastly from our friends in the US. There, an infantile spasms diagnosis and an acceptance that development delay was a given meant automatic enrolment in early intervention services for hours and hour of therapy. In the UK, services are overstretched and underfunded and it was very much a case of wait (the wait always being measured in months) and see. It is often left up to parents to find their own resources – we found private physio, a local parent/carer charity, the children’s centre, and Snowdrop (a charity for children with brain injuries) In this, as at every other stage, it was other parents who were the best support and the best source of information.
This difference in treatment pathways led a group of parents who had ‘met’ on the international group to set up a UK based group. Sophie McLean decided to produce an IS awareness video with footage of several of our children and put it up on Youtube. The various versions of that original video have now been watched nearly half a million times. This success led to the idea to set up a charity to address the lack of available support, and eight mothers (Belen, Samia, Amy, Bex, Lisa, Jade, Clare and I) took the plunge and volunteered as trustees. In March 2017 UKIST was registered with the charity commission. In our first three years we have sought to address the gaps in provision that we experienced.
So, as we celebrate Faith’s five years of seizure freedom with rainbow sprinkle cake, what do I want to say?
Firstly, that I recognise that our family has been profoundly lucky in so many ways in our encounter with this horrible condition, and that I am grateful every day for what Faith can do, and always aware that so many others have not been able to control the seizures or had such a good outcome.
Secondly, that we’ve cheekily adapted the serenity prayer for our IS warriors “grant me the strength (or coffee) to change the things I can, the grace (or wine) to accept the things I cannot, and the wisdom to know the difference” and commit to doing what we can to change things for the better for other babies and families who are affected.
Thirdly, I want to say a huge thank you to all the wonderful people I have met along the way that I might not otherwise have encountered. You have enriched our lives immeasurably.
