Brain haemorrhage: Charlotte, part 1

Published: May 2012. Child’s age at time of brain injury: 11 years. 

How Charlotte had her injury

We were on the beach enjoying a family holiday in the Isle of Wight when Charlotte suffered a life-threatening brain haemorrhage.

Charlotte went off on a speedboat with her friend and their father. She was on the boat until she suddenly experienced a terrible headache. She was brought back to shore and said: ‘Mummy, I don’t feel very well’, then she vomited and collapsed unconscious in my arms.

We didn’t know it, but Charlotte had a very rare brain condition. She was airlifted by the coastguards’ helicopter to a specialist brain unit at hospital. It was terrible seeing her being taken away and not knowing where she was going or what for.

When my husband and I got there, we were taken to an empty room and told categorically that Charlotte would not survive.”

At hospital

I think parents go through different stages of grieving. At first, we just didn’t know what was going on.

Charlotte’s brain was swelling and they had to drill into her skull to drain the blood from the haemorrhage. She was on a life support machine for 10 days and in a coma for five weeks.

When she was in a coma, I would read her familiar stories from when she was younger, which I think helped both me and her. My husband said that maybe she couldn’t hear what was going on, but if she could, then we had to make sure she knew we were there.

When she eventually started to come out of the coma she couldn’t do anything; she could only blink for a ‘yes’.

That time at hospital affects everyone in the family. Charlotte’s brother was pushed from pillar to post. We were just all-consumed with what was going on with his sister, and I suppose we weren’t able to think straight. It was very hard on him. He was very quiet and worried when it first happened.

Seeing the physios working with Charlotte at the hospital could be hard to take as a parent. She was obviously very tired and it sometimes seemed like they were pushing her too hard. But I realised I had to let them do their jobs.

It might sound strange, but one of the hardest things about being at hospital all the time was that you can’t change your clothes or shower as much as you’d like.

It can become like living in a bubble. And the sleep deprivation was very tough – it meant even the slightest thing could set me off. Sometimes I had to make time to myself, to take a breather.”

Coming home

Eventually, Charlotte came home and we thought life would be normal again. Charlotte could walk and talk, and looked just like any other girl of eleven or twelve. But her mental age was only really about five or six. She couldn’t remember how to do everyday things like getting dressed or eating meals.

As the days progressed, I realised that looking after Charlotte was very similar to a time when I’d cared for an elderly relative. She was very forgetful, confused, and she wasn’t safe without constant supervision.

It was difficult explaining what had happened to neighbours and friends of the family. Charlotte seemed fine to people, and it was hard to explain that there were these hidden difficulties that might not be obvious to them.

It felt like we were going through something quite horrific as a family, but other people couldn’t see that there was anything to worry about. I suppose they couldn’t see the things that were going on behind closed doors – that she’d forgotten how to brush her teeth or dress herself.”

Rehabilitation

We went to see our GP to try to have Charlotte assessed. At first, the local health authority refused to fund the assessment. I think the process was so much harder because on the face of it, she seemed absolutely fine.

It was a constant battle to get people to realise she had real difficulties that needed to be addressed. It could be a real fight with the different people involved. 

Eventually, I got our local MP involved, and with lots of pressure, she was eventually assessed. Then it was decided that she’d need specialist rehabilitation.

We managed to get Charlotte referred to a specialist centre. She started to have therapy sessions every day for four months. She learned how to speak in sentences again, how to get out of bed. She also re-learned how to get dressed, eat meals and communicate with the world again.

In a way, the neurologists at the hospital saved her life, but it was rehabilitation that gave her back her life.”

After rehabilitation

I decided to become a full-time carer to look after Charlotte. I wouldn’t have done it any other way, but it was hard to give up some of my interests and the things I did in my own time.

But the short breaks (sometimes called respite care) have been very helpful. The things around the house don’t go away, and it was very useful to have some space to catch up with everything.

Charlotte is at school now. The school was fantastic, but it wasn’t easy to get the Statement of Educational Needs. You have to be very careful about the language, and I suppose you have to make sure you’re happy with the small print, just like anything else.

Charlotte was about to start secondary school when she was taken ill, so we had to phone the school to explain what had happened. They held the place for her, and we kept them posted about what was happening on a fortnightly basis, which made it easier when she was able to start getting ready to go there.

We gave the teachers an idea of what they had to be aware of with Charlotte, but I decided to set up a regular chat with the school each term.
She started with a couple of days a week, and then just built it up from there. The school gave Charlotte a sheet with a photograph of all of her teachers, which was colour-coded by different subjects. They also gave her a map with different colours for the different departments, so she could join it all up in her head.

She’s not expected to do the same homework as the other students, but the teacher comes up with reduced versions of the same homework. It sounds odd, but she actually likes the fact she’s given homework along with the rest of the class. I suppose nobody likes to stand out at that age.

Charlotte has made fantastic progress, and I’m very proud of her.