Charlotte's amazing brain - The little girl who proved them all wrong

Charlotte's amazing brain - The little girl who proved them all wrong

Hi everyone, I'm Leila. I'm a 32 year old single Mum of 2 beautiful daughters and in April 2012, our world changed forever.

After a week of full on job interviews, we were all shattered. I had heard that the job I most wanted was to be offered to me on the following Monday, our perfect house was ready and waiting for us to snap it up and it was the end of the Easter holidays so we were looking forward to some relaxation and time together.

When my youngest, Charlotte was a toddler, she always wanted to sleep in my bed. We made a deal that if she had been good during the week, she could have a girly sleepover in my bed on Friday nights and this has carried on for years. It's also, what saved her life.

So - it's Thursday, as I mentioned we were all tired from going backwards and forwards to interviews and were looking forward to chilling out before we had a full weekend of friends visiting, family birthdays to attend and getting ready for going back to school.

Charlotte started asking if she could sleep in my bed that night. "No, it's only Thursday but nice try", I said. She pleaded with me as she does but then her sister joined in too. "Oh go on Mum, it's the holidays!" Well, if you knew my daughters, you'd know it's very difficult to say no to the big, blue, pleading eyes let alone when they both start!

"Ok, Ok!" I said, "Let's drag a mattress out and you can both camp out in my room and we'll have a movie night" This seemed to do the trick. We sat up watching TV, eating snacks and having a giggle. Perfect.

At 6:30am the next morning (Friday 13th April), I woke up to Charlotte breathing very strangely. Almost as if she was snoring and getting her tongue stuck at the back of her throat. But then I realised she was only taking a couple of breaths at a time. I tried to turn her over to see if that would help and at that moment my heart sank. Charlotte had wet herself, something she never did, and was cold and floppy. Some piece of half knowledge came to me and I squeezed her ear and put pressure on her chest with a knuckle to get her to at least grumble at me but there was absolutely nothing. I quickly asked my eldest daughter, Megan to throw me my phone and rang an ambulance. Even then, Charlotte just looked so perfectly asleep that as I was telling the phone operator what was happening, I was half expecting her to wake up and ask me what I was doing!

A fantastic rapid response & ambulance team arrived in double quick time and we were rushed to our local hospital where it was discovered that Charlotte was haemorrhaging in her brain. Even the doctors were shocked and stunned at this and to quote one of them, "a brain haemorrhage in a child is ON the list of things we rule out but it's a very long way down that list".

Charlotte, had been born with a weakness to a blood vessel, called an aneurism. Nobody knew about this aneurism and, not one to do things by halves, Charlotte's was on a main artery at the back of the brain. This had ruptured (burst) in Charlotte's sleep and the breathing I had woken up to was actually her taking her last breaths. It's a very distinctive sound and why everything happened so quickly once the ambulance staff had heard it. If Charlotte had have slept in her own bed that night, she wouldn't have stood a chance. She never woke up before 11am in the school holidays or at weekends so I wouldn't have even checked on her for another 4 hours or more. Time she certainly didn't have.

In all honesty the next few hours are a blur. Charlotte was intubated (a tube was inserted into her windpipe and a machine helped her breathe) and transferred via ambulance to Leeds General Infirmary to a team of specialists who had been in touch with the doctors at our local hospital whilst Charlotte was being treated. I wasn't able to travel with her in the ambulance as she was too poorly and needed a lot of doctors and equipment. At the time I remember saying this wasn't an issue, "Just get her where she needs to be! Don't leave her! Help her!"

Charlotte arrived at Leeds and was immediately taken into theatre where my favourite people in the whole world, stopped the bleeding in her head. Luckily, a specialist was on hand to perform a procedure called coiling. This is where tiny platinum coils are inserted through the groin and up into the aneurism to pack it and block it and strengthen it. As far as I know, there is usually a wait for this to be done but luckily for Charlotte, the very clever and talented person who does this was in the building and able to help her.

Charlotte pulled through this surgery and the next day started waking up from her coma. To hear her voice again was phenomenal. She knew who I was and who her sister was and was doing brilliantly. Unfortunately on Tuesday 17th April, Charlotte’s condition worsened as the blood in her head started causing spasms in the blood vessels and I was told that she was enduring massive strokes and advised to call my family as she was in very real danger of not surviving.

The frantic calls home to tell somebody to go and get Megan and bring her so that she could potentially say goodbye to her little sister were horrible. What was I supposed to say?! All I remember is saying “She’s having strokes, bring Megan now!” – What a horrible way for my family to hear that news! I have apologised since but in those situations I’m afraid manners and breaking things gently to anybody else just went out of the window. There were 2 people on my priority list and 2 people only.

Charlotte amazingly pulled through yet more surgery but I was told to prepare for her to have sustained quite severe brain damage, the result of which we wouldn’t know for a while. So we waited. We sat by her side, we talked to her, we played her music and we hoped. Charlotte woke up after a couple of days and just stared. She didn’t move, or speak, or blink or even swallow. A doctor came to speak to me and told me that this wasn’t normal and that this was potentially how I would be taking Charlotte home eventually. This news killed me as I looked at my happy, giggly, vibrant little girl just lying there with no expression in her eyes at all. Did she just hear all that? Was she scared? Did it hurt?

A day or so went by and Charlotte’s favourite song came on the radio which I sang to her. As I sang it to her she smiled! Had I just imagined that?! The nurse asked me to do it again so I did, and she smiled again!

That was it, she didn’t do it again for a few hours, by which time I was in bed with her reading The Gruffalo in a silly voice. ““ASTOUNDING!” said the Gruffalo” I read in my best astounded Gruffalo voice, and she laughed! She still wasn’t moving or blinking or swallowing but I’d just made her laugh. I giggled with her then said “You’re still in there aren’t you? Well I’ll tell you what kid, I’m going to be here all day, every day bugging you with songs and silly voices until you get up and you tell me to shut up. Are you listening? You have to say “Shut up Mum!”” and she laughed at me again. She could hear me! And not only could she hear me, she understood me!

I kept my promise and she did as she was told. She continued to come back one bit at a time and 8 months later is sat in front of me after taking her Grade 1 ballet & tap exams, getting her PJs on ready for school tomorrow.

So much is yet to come back to her and she has been left with quite severe issues. She has learning difficulties, weakness, she tires easily and is partially sighted but she is more determined than anyone I know and has never once complained about any of it. She has worked so hard to re learn walking, talking, reading, writing, even how to go to the toilet has had to be re learned, but she has done it with courage and is a huge inspiration to me.

As a side note, I wanted to point out that I have grown up surrounded by NHS staff. My mother was a radiographer as was an aunt. Another aunt was a nurse etc etc and so I have been used to watching what these angels do for people every day with little pay and even less thanks. I have never, however come across a more genuinely caring set of people as I did in Leeds over the next 7 weeks. The paediatric intensive care nurses are a different breed entirely, full of care and compassion and calm which is exactly what's needed in those situations. The surgeons involved in Charlotte’s care were .. well .. I still can’t find an adjective to describe them adequately! To say they went above & beyond to help us is an understatement. Even the anaesthetist would stop me to ask how she was or to say they’d heard she was sitting up that day for example. They really did go out of their way to find out about how she was even when she wasn’t under their immediate care.

Charlotte spent 7 weeks being rehabilitated at Leeds General Infirmary. She had daily physiotherapy, occupational therapy, speech & language therapy & school sessions which were absolutely crucial to her recovery and I cannot thank the staff enough for their time, care & consideration in working to Charlotte’s specific needs. Between them all they gave me my daughter and therefore my family back and I can never express enough gratitude.

I am now working hard to raise awareness of paediatric strokes & acquired brain injury and hope, one day to ensure treatment and support is readily available, particularly in education for these children who fight so very hard to stay with us.

Thank you for reading!

Leila Neve x

3 Replies

oldestnewest
  • What a powerful story Leila, thank you so much for sharing. Can't wait for more people to join this community, read your story, and also share theirs. Your little girl is the perfect example of what strength means!!

    Have a very merry Christmas

    Best wishes to you & your family,

    Lora Schellenberg

    HealthUnlocked

  • Hi Lora,

    Thank you so much. She's such a positive fighter you can't help but be swept away and inspired by her.

    I really hope a lot of people join this community, I am absolutely dedicated to raising awareness and giving these wonderful children the very best of everything.

    I hope you're having a fantastic Christmas.

    Leila x

  • reading this gives me hope my son callum has a lot of problems and when he was seven months old i was told this child wont walk or talk or basically anything but he has proved them all wrong and although he has more problems to deal with every single day he has a good sense of humour and continues to smile and laugh. doshie42