In July 2011, Sophia Grew contracted viral meningitis at birth which led to her acquiring a brain injury. This was a difficult time for the whole family as she developed cardiac problems and a bleed to the brain as well as going into major organ failure. Sophia was on life support for 8 weeks and in Hospital for 10 weeks. Sophia’s mother, Janet, shares her experiences of acquired brain injury.
After Sophia was discharged from Hospital we were left very much on our own. We still had a very sick baby. I turned to outside agencies to seek support. In hindsight the aftercare was not very good. It was not co-ordinated. I had to contact one of Sophia’s consultants to get her referred to the local Child Development Centre, from then on in things started to improve.
The thing with Sophia was she was so ill and had never been expected to survive.
This had a huge impact on our oldest child who was 8 when Sophia was born. It had been extremely difficult for her. She understood what was going on and she, with us, was prepared that Sophia may pass. Her behaviour was greatly affected by this. It had an impact on everything; her whole coping mechanism was damaged. She developed attachment disorder. It was a very difficult time that we are still working through.
Prior to Sophia’s meningitis, I just thought of children who had an accident as those who acquire brain injuries. As a mum of 4, to be honest, I never thought that an acquired brain injury could happen to a baby. I never considered meningitis as a brain injury. It was one of those things as a parent you don’t ever feel you will need to think about.
I suppose I always thought that it was the very extreme. I see that every day now, even with our family dismissing that there is something wrong with Sophia. They simply think because she can walk and her speech is improving that she is alright. They don’t see her daily struggles, her falling all the time, not sleeping, or crying more than the average child.
Sophia is unique and I get annoyed that people will not accept that she might have problems. She has problems with her eyesight, memory, coordination and behavioural issues. But people dismiss what she has been through and what she is going through. Brain injury really is a silent illness.
If I could offer other parents one piece of advice, it would be to question everything and everyone when your child is sick. As my husband Jim said when Sophia was critically ill on life support “we are not here to make friends we are here to get Sophia home.”
I also feel it is essential to seek support. It’s impossible to cope without it and always be mindful of your other children, as sometimes they are forgotten about.
The Child Brain Injury Trust has been marvellous, providing us with support and information. It has helped our whole family including the kids who have learned a lot about brain injury. The Trust’s sibling days enabled them to feel special, which is so important when so much time and attention has been given to Sophia.