My son Ewan was five when he started having really painful headaches. Over the course of a couple of months, they got steadily worse until he was being sick from the pain. At the hospital, we were assured it was probably childhood migraines, but he was put on the waiting list for a CT scan just in case.
In the meantime, the headaches and vomiting became worse, coupled with extreme tiredness. After a particularly bad night, we took him to A&E and he had the CT scan he'd been waiting for. As my son slept in the children's ward, I was given the devastating news: "Your child has a brain tumour".
Ewan went through 12 hours of brain surgery in the Royal Children's Hospital, Belfast, to remove the tumour. Beforehand, the surgeon explained the possible outcomes: death, paralysis, mutism. No parent wants to be confronted with those risks, but the tumour would continue to grow if left untreated. We signed the consent form.
Ewan survived the surgery but his neck and jaw muscles had been affected, and recovery can be a lengthy process. He needed a lot of physiotherapy - this was hard for him, and he'd often scream in pain and refuse to move or eat. Eventually it became easier as his neck and jaw began to loosen.
It seemed he'd recovered well and family life returned to normal, but two years later Ewan, aged seven, required another eight hours of surgery as the tumour regrew. It was only after the second surgery that we became aware of the long-term effects - as well as the physical issues, his concentration and memory were affected. At first, we just noticed small things; if you asked him to get ready to leave the house, he might only remember one thing from the list of teeth, shoes, schoolbag.
Then, Ewan's teacher noticed how easily distracted he was in class. Five minutes after being given a task he'd be staring out the window and had no recollection of what he'd been asked to do. His writing speed was slower than his classmates' so he'd take longer to complete tasks, and if there was a lot of activity or excitement in the classroom it could be quite overwhelming.
Ewan's physiotherapist recommended we contact the Child Brain Injury Trust. When we gave them examples of his difficulties, it was like ticking a list of the common side effects of brain injury. Ewan's surgery had resulted in an acquired brain injury (or ABI) due to the impact on the delicate brain tissue. An ABI can happen in many ways, as Lisa Turner, CEO of the Trust, explains: “an ABI may be the result of an accident, stroke, illness or brain tumour. It can also occur as a result of surgery to address another issue. Brain injury will affect everyone differently but often has a devastating and lifelong impact on the child and their family”.
It was a relief to find the answer for what Ewan was going through, and to know we were right to be worried. It's also been helpful to have practical support; for example, the Trust helped us provide information on Ewan's requirements to the examining body for his recent tests. He sat them in a separate room with a prompter to put him back on task if he got distracted, and he did exceptionally well.
Sometimes small things can make an enormous difference. We've worked on strategies to break down tasks into manageable tasks, and with a grant we were able to buy a small tablet for Ewan to use at school. Now, he can take photos of what's been written on the board so he can finish writing his notes at home, and he misses less of the vital information.
We don't know what the future holds for Ewan, we just have to wait and see as he matures. After everything he has been through, we are confident he can cope with any issues that arise in the future. The main thing is that we are just grateful he is still alive and that he's healthy and happy.
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Guest post: "My son is learning to cope with the lifelong impact of brain injury"
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MumsnetGuestPosts · 11/10/2016 16:38
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