Charlotte's story

Hiya, I'm Leila and on 13th April 2012 (yes, it was a Friday), our world changed forever. After going to bed with 2 perfectly healthy daughters, I woke up to the youngest one, Charlotte, 7, breathing very strangely. Almost as if she was snoring and getting her tongue stuck at the back of her throat, but only taking one very laboured breath at a time very slowly. I tried to turn her over and that nightmare that every parent has came true; my girl was cold & lifeless.

Everything went quite quickly after that. A rapid response team arrived with paramedics close behind and nobody could rouse her. They whisked Charlotte down the stairs and out of our house to the waiting ambulance outside where they closed the doors leaving me and my eldest daughter, now 12, outside feeling fairly confused. Was this actually happening? Why wouldn't she wake up?

My first clue that this was even more serious than it first appeared was that the rapid response guy left his car at my house and travelled in the ambulance. I've never seen them do that. Then when they insisted Charlotte's sister rode in the front with the driver, telling her it was due to a lack of room, alarm bells started ringing even louder (if that was possible).

Charlotte was rushed to Aiedale hospital where a fantastic team of doctors, nurses, peadiatricians, anaesthetists etc were all waiting at the door for us. Even the reception staff came to help and took Charlotte's sister for a drink. Very quickly the situaion was unfolding into something extremely serious. Within 5 minutes of being in there, Charlotte gave the doctors a huge clue in what was happening when her left pupil 'blew'. A sign of a bleed at the back of the brain. Things really started to blur after this as Charlotte was rushed out of resus', myself and all the doctors running down the corridors to the CT scan area. A couple of minutes later I was given the news that Charlotte was indeed suffeing a huge brain heamorrhage and was bleeding significantly into her brain. The prognosis wasn't good however they were on a conference call from the scan room right now to specialists in Leeds who through the wonder of technology, were looking at her scans and deciding what to do.

I don't remember much of the next few hours but Charlotte was intubated immediately (a tube inserted into her windpipe and a machine to breathe for her) and transported by ambulance to Leeds General Infirmary. Things were so bad that I couldn't go in the ambulance with her to allow room for the doctors and machinery keeping her alive during the journey to Leeds.

By this time Charlotte's Grandma had arrived and her sister had been gently told what was happening. We waited to be picked up and taken to Leeds by Charlotte's step Grandad who I'm sure was driving close to the speed of light however it felt like weeks to me.

When we got to Leeds, Charlotte was already in surgery so we played the waiting game. The thought of somebody opening my baby's skull and doing something to her brain was a strange thought. Part of me wanted to run into theatre and drag them off her yet the other part knew it needed to be done.

A fantastic surgeon, Ian Anderson, came to find me to explain that they had managed to stop the bleed and were just waiting for another proceedure to begin called coiling. This would take a few more hours and I will always be thankful to him for not only coming to find me to explain, but also for not really caring about waiting for a signature of permission from me and taking her straight into theatre. It was that close. If he ad waited, she wouldn't be here...

So lots of waiting. Lots of cuddling. Lots of crying. But eventually Charlotte came back from theatre and onto intensive care where I met some of the most remarkable human beings I have ever encountered. Never have I come across a more caring, compassionate & calming breed of people in my life. Faced with my 7 year old daughter hooked up to every machine imaginable with countless drugs being pumped into her, I was immediately swept up by a nurse who explained what everything was, how it worked and why it was needed. It was where I first heard the phrase I was to relay to Charlotte's relatives every day. If the nurses aren't panicking, don't panic. It was over the next few hours I met a man who came to check on Charlotte whose expertise I would come to rely on.

A couple of days later Charlotte was awake and transferred onto a ward where she was beginning to speak and recognise people. She'd even been able to have a few drinks!

Unfortunately Charlotte deteriorated after a day or so on the ward and she became very agitated. Another brilliant surgeon involved in Charlotte's case, Chris Derham (the man I'd met in intensive care) realised something was very wrong and rushed her out for a CT scan. As he came back into Charlotte's bay I could tell something was wrong. I don't think I was prepared to hear that she was having strokes. I remember my knees giving way and Chris holding onto my arm. The next thing I remember is being out in the corridor calling our family for someone to bring Charlotte's sister as Charlotte wasn't expected to survive this one.

Charlotte's entire family descended on Leeds where we sat for what felt like days in the coffee shop, me sitting on my hands to stop me throwing every single table over in complete frustration at my inability to do anything for her.

I then got the most glorious phonecall I've ever had. Charlotte was out of surgery and back on intensive care! We were told that she had sustained significant brain damage and the next few hours were crucial but she was here. I still had my baby.

Over the next 5 months, Charlotte, through the astounding efforts of the surgeons, doctors, nurses, physiotherapists, occuational therapists, speech & language therapists, play therapists and of course her own sheer determination has learned to swallow, eat, drink, sit up, walk, talk, go to the toilet, dress herself & brush her teeth. She is even fairly recently learning to read & write again! Pretty amazing stuff from a girl who lost a lot of her sight due to the stroke...

Charlotte now has what is termed an 'acquired brain injury' and recieves specialist care from teams spread across Manchester, Leeds, Burnley and Airedale who I will introduce you to at a later date...

I'm going to document her recovery in more detail over the coming entries as so much has happened, you'd be here all week reading this post otherwise!

I still have a very poorly little girl who has many, many issues but if everyone had only 2% of her positivity and determination the world would be a much nicer place. She refuses to get upset so I have no right to be!

I really hope other people can get something positive from hearing about Charlotte's recovery whilst raising awareness of childhood strokes and acquired brain injury.

Thanks for reading!

L x