Encephalitis: Millie, part 1

Millie was only 18 months when severe seizures turned out to be encephalitis which resulted in a brain injury. Her mum Sam tells their story.

Published: October 2015. Date of brain injury: June 2012. Child's age at time of injury: 18 months It was the 1st of June 2012. Millie was 18 months and I was putting her to bed. For some reason that night I had this over overpowering feeling that I shouldn’t leave her. Something just told me I should stay with her. Thankfully I did as she suddenly started having a seizure and having convulsions. My baby girl was dying in my arms. It was almost as if she was gone, dead in my arms.
Millie and her grandad
After Millie’s continuous seizures on the way to hospital and instruments being inserted into her to keep her alive, her little body had just shut down. As doctors worked on Millie at hospital, I felt helpless. We all felt utterly helpless. It was agonising.

Encephalitis diagnosis

We found out that Millie had autoimmune encephalitis and that the seizure had caused damage to every cortex of her brain. We were told to expect the worse as Millie was in such a bad condition they were struggling to control her seizures. Doctors took us aside and told us she wouldn’t be the same little girl after all of this, if she survived; she would be severely brain damaged, would never walk, talk, see or hear. We never gave up hope and Millie proved the doctors wrong and made it. Millie still continues to battle and prove people wrong. Millie was, however, left with a brain injury. At first I personally felt grief, it was like my little girl had died and been replaced with a new child. After a while determination sunk in and I was determined my little girl was going to get through this.

Accessing rehabilitation

We were discharged but I undertook a lot of research to get the best rehabilitation for Millie and thankfully because of this we were able to get her residential rehabilitation at The Children’s Trust in June 2013. I wish that we had been given information about rehabilitation services available instead of having to find it ourselves. We could have got her there a year before if they had.  Looking back, I also feel that the doctors could have explained what parts of Millie’s brain were damaged the most and what they affected. It was a huge learning curve for us and a lot to take in. Millie’s time receiving rehabilitation was the one way we could get her back, to get back a shadow of what she was. It helped her recover again, so much more than what we could offer at home. When we got the call that she had been accepted, I wept! During her months there she became stronger and began to sit unaided, she learnt how to drink again and no longer needed tube feeding which was a massive achievement. Millie has had a lot of ups and downs over the past three years; sometimes she loses some of the skills she has learnt but every time Millie bounces back stronger. She is now crawling which is unbelievable and has started school full time. I am certainly one very proud mummy. We had such a great support network around us that we were emotionally supported every step of the way. Since Millie's brain injury random people do look at her in her chair I always feel this is because she is so beautiful but I do feel there needs to be more awareness of childhood brain injury. The effects of brain injuries are catastrophic not only does it affect the child but their family and friends it literally turns your life upside down. The most worrying thing Millie and I had to worry about before was what to wear or what to do that day. Now it's medications, hospital, seizures and worrying every day will the seizures take my child from me. You always think it won't happen to you but it can. Millie is unable to talk; she can say mum, dad, nan and granddad but that is it. She is unaware of danger and is wheelchair bound. She has been left with complex epilepsy and Dystonia. One thing I feel that has helped Millie is the rehabilitation we have received. Also sensory toys play a massive part. My hopes for the future is that Millie continues to thrive and to stay as healthy as possible. We live every day as it comes. We take nothing for granted and treasure every precious moment. If I could offer one bit of support to parents going through a similar experience I would say “Your child has fought so hard to stay with you and you have fought with them. Cherish every moment and never give up hope.”
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