Guest post: "My son is learning to cope with the lifelong impact of brain injury"
Surgery to remove two brain tumours left Kerrie's son Ewan with an acquired brain injury – practical support has meant their family can get back to normal
Posted on: Tue 11-Oct-16 16:38:14
(15 comments )
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.
When we named Ewan's 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 due to the impact on the delicate brain tissue. It was a relief to find the answer for what he was going through, and to know we were right to be worried.
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.
All the best for Ewan and your family Kerrie it's hard xxx
I can't begin to imagine how hard all of that has been on you and your family. Managing Ewan's ABI to give him the best must be a daily struggle to add to it all.
I'm glad you have the help and support we never had thirty years ago when my brother was discharged with no further information. it was a hard road. I hope the future is bright for you all and wish you well.
Thank you for sharing your story. It is so very hard when something that saves the life of your child causes terrible damage itself. My son was diagnosed with a brain tumour just before his 16 th birthday. The surgery caused terrible damage but like your decision he would not have survived without it. My son lived a further 27 months.
Unfortunately there is so little research and funds designated to childhood cancer.
I do so hope that your son and all your family get all the help you can so that Ewan continues to live a full, lengthy, happy life.
Sending you all much love, strength, care and courage. X
Lots of love, thank you for sharing yours and Ewan's story x
Thank you for sharing your story
Thank you for sharing your story , my daughter who's 12 had a head injury when she was 2 ( although at the time she regained consciousness and seemed fine) over the years there been issues memory similar to your son ie she can't remember things I asked , forgets ppls names often, and is behind with most of lessons , she also lies a lot, not like normal lies , but lies that I can be sat there and she will say something and I know it's just not happened , anyway they now thing that my daughter has complex language difficulties and a thing called confabulation which means that her brain fills in the gaps she's missing , so where I see lying she really thinks it's true. We are in the process of getting help but I know your pain , I just wish I asked for help to start with rather than just leaving her be as I thought she was a difficult child , and there for my responsibilities.
Love and light to you and your family
Thank you for sharing your story.
We are going through the same thing. Learning to live with ABI. It is made all the more hard as ABI is not recognised or understood in the welfare or education systems so you need to prove and justify yourselves all of the impacts all the time. There are no boxes where you can tick 'ABI' but good to hear the Brain Injury Trust can help. We'll be checking them out. Let me know if it is OK to post the link to our blog here. x
It is sad to read your story and that you are so far away because I am on the board of the Hillingdon Brain Tumour Group. It was set up by a lady called Becky who started the group when her husband was diagnosed with a brain tumour around 6 years ago. We are pleased to also be in the process of opening a charity shop called The Centre of Hope which will also be a support and advice centre for people who have a brain tumour, brain injury or for carers to pop in for support and advice.
Please go on the Hillingdon Brain Tumour Group facebook page for more information. We have a very large number of people with brain tumours in the Hillingdon Borough , particularly in children and Becky wants to address this and make people more aware of the signs to look for as to many people are mis-diagnosed.
I hope you find this of interest to you.
I hope he has an EHC Plan to ensure that the right support stays in place?
Hi, I know what hardships come with Brain Injury. My Autistic son, Scott Vineer, was attacked and almost died in Lisburn in 2012. We found a lot of help from Brain Injury Matters in Castlereagh Belfast. They do loads of activities with their service users. Good luck for the future. XX