There is a growing number of parents in Australia who are facing one of the toughest and hardest decisions concerning their child’s health. That is, the decision to put their child through hemispherectomy surgery. This is Kelly and Bryce Wilton’s story….
The doctor looked at us intently and said: ‘You will have to consider removing half your son’s brain for the best outcome of his severe epilepsy condition.’
We were gobsmacked. How could this be possible? How could we hand our sweet, perfect little boy, who was just shy of turning two years old, over to the surgeon to do what sounded like something out of a horror movie?
Well, we didn’t.
Four years ago we could not have taken the risk on our son Mikey’s incredibly rare Hemiconvulsion Hemiplegia Epilepsy Syndrome (HHE). The risk would have been too great, and sometimes, you need to weigh up the options and trust your gut. We said thanks, but no thanks.
Years past, and we believed our son – growing from a toddler into a little boy – was getting better despite his daily seizures. To our eye, and many of the people supporting us, Mikey was growing, developing and striving, despite his array of challenges his body was fraught with.
Unfortunately, last October, Mikey had a week-long test for the electrical activity in his brain (an EEG) where we were told that surgery would be his best option. His cerebral hemisphere was playing havoc and causing far too much trouble for the other half of his brain to progress and enable him to learn, and live a life to his full potential.
And so we were faced with an impossibly difficult decision again.
We researched everything we could find about our little boy’s rare and catastrophic condition. We took our him to all the therapy that was recommended and attended early intervention. We set up a special needs playgroup in our local community, and created an online patient page through Rare Connect for HHE Syndrome. We connected with other parents all over the world, who had also been dealt this unfortunate hand of fate, a syndrome that was simultaneously changing the course of our kids’ lives, forever.
LISTEN: What it’s like to parent a daughter with a disability. (Post continues…)
A conference held by The Hemispherectomy Foundation Australia on the Gold Coast in March allowed us to meet with other parents who have been through this process. We made new friends in a world most parents can’t and don’t want to imagine. On the conference’s second day we met the incredibly brave families and their children who had this life changing surgery.
The kids we met were living proof that hemispherectomy surgery is essential for Mikey’s life.
Our son will turn six at the end of this year. And after nearly four years of seizures, failed medications, some seizure-free months, loads of therapy, early intervention and professional advice, we have arrived at the decision to disconnect or remove one half of our son’s brain.
It is frightening as all hell. But this time, the thought of hemispherectomy surgery gives us hope.
We have come full circle in our decision making process. This time round, we feel informed, supported and trust in our hearts, this is what we need to do to give our son the best chance possible to live a life seizure-free. A life that will be happy and full.
Until a cure is found for these types of rare epilepsies, this surgery is our only option. But we don't need pity. We need support and understanding from the wider community to embrace children like our son and their families as they embark on this mammoth, life-changing journey.
We have been living in fear for far too long. Now, the risk of not doing the surgery is unbearable. Despite our anguish, Mikey needs this surgery.
It is time for us to come out of the darkness and move forward into the light
Kelly Wilton works at Source Kids disability magazine. Source Kids are holding their first Disability Expo in Brisbane on the 6th and 7th of July. There will be a great variety of exhibitors and speakers over the 2 days, including a ‘trial and test’ area, sensory space and music therapy.
Follow the link for further details: https://www.sourcekids.com.au/expo-brisbane