I happened upon a new blog via Twitter the other day, which told a powerful and emotional story about a young girl who suffered childhood stroke, was close to death, but with the help of a devoted mother and family and a dedicated medical team has pulled through.
Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn't assured.
I found Leila's blog within days of publishing a post about The Brain Injury Hub and contacted her to pass on the resource. Leila, in turn, has written about Charlotte's fight for life for Special Needs Jungle as a way of highlighting childhood stroke and the devastation it leaves.
For the last 12 years, I have had two beautiful, intelligent, high achieving, happy, healthy daughters. I’m a single Mum and the 3 of us are very close and have possibly the girliest household in the world.
However, on Friday 13th April this year, our world came crashing down around us as I woke up to my youngest daughter, Charlotte (7) breathing very oddly. At first it sounded like snoring but then I realised she was missing a few breaths each time. I tried to roll her over off her back thinking this would help and realised instantly that something was badly wrong. She was cold, floppy and unresponsive. Every parent’s worse nightmare!
My eldest, Megan (then 11), was brilliant and shot into action, running outside to direct the ambulance in while I stayed on the phone to the ambulance service and was talked through holding her chin and throat in a certain way to protect her airway from collapse.
The ambulance crew arrived in record time along with a rapid response unit. Nobody had a clue what was happening and Charlotte was immediately taken straight out to the ambulance where she received treatment as Megan and I waited outside feeling confused as to what was happening. I realised how serious it must be from the little clues the paramedics were giving me. The rapid response man, instead of leaving the scene once the ambulance arrived, left his car at my house and rode in the ambulance with Charlotte. The driver also took Megan to ride in the front with him which terrified me as it told me they were keeping her away from anything traumatic.
We were taken to Airedale Hospital where a team of nurses, doctors, paediatricians, consultants & anaesthetists met us and rushed us into resus’. Even the receptionists came to help and took Megan off for a drink. The theory was that Charlotte was coming out of some kind of seizure. But why? She’d never had them before. She very rarely even got a cold. What was going on? We quickly found out as while I was leaning over Charlotte trying to talk to her, her left pupil ‘blew’. This is where the pupil quickly dilates and is an indicator of pressure at the back of the head. We all then ran down the corridor with Charlotte to the CT scan room where I had to sit outside and wait .. After a couple of minutes a Doctor came out to tell me that my beautiful, perfect baby girl was haemorrhaging badly into the back of her brain and was fighting for her life. She had had a weakness in an artery called an aneurysm and this had burst or ruptured and was bleeding heavily. I remember asking if she was going to die, assuming that I was hearing things wrong and panicking and they would tell me to stop being silly but she just looked so sad and said “I don’t know, it’s very serious but we’re working really hard.”
Whilst all this was going on, the team in the scan room were on a conference call with a team of neuro surgeons in Leeds and asking advice on how to proceed. Charlotte was intubated which means a tube was inserted into her windpipe to allow her to be connected to a machine which would breathe for her. She was now in a coma and being transferred immediately to Leeds General Infirmary.
This was the longest period in time in my entire life and if I’m honest I can’t remember a lot of it. Charlotte was extremely poorly and it was a huge possibility that she wouldn’t survive the journey to Leeds. Because of her condition, a team of specialists had to go with her along with life saving equipment so there was no room for me or Megan. At first this was fine! Just get her there, I thought. But the minute she left I started panicking and needed to be with her. By this time my Mum had arrived and we explained to Megan what was happening with the help of the same doctor who had explained things to me.
We waited for my Mum’s partner to arrive and take us to Leeds and in terms of the time taken to travel the distance he had to travel, he got to us and got us to Leeds super quickly! It felt, however like an eternity to me. Why were there so many cars on the road? Why wouldn’t they move? Was she ok? They didn’t have my mobile number! How far away was Leeds anyway?
When we got to Leeds, Charlotte was already in theatre. I will never EVER be able to express my gratitude enough to the people I met there, and at Airedale whose actions over the next few days saved my daughters life on more than one occasion. Because I wasn’t there and Charlotte is a child, a signature was required before any surgical procedures could be carried out. However after waiting for another eternity, a wonderful surgeon came to find me and explain things up to that moment and to apologise that he hadn’t waited for my signature as there hadn’t been enough time and to explain how I went about complaining about him not following procedure. Seriously? I would have slapped him if he HADN’T taken her straight in!
The bleeding in Charlotte’s brain had been stopped and she now needed a 2nd operation called coiling. This is where tiny platinum coils are passed into the groin and up through the blood vessels until they reach the site of the aneurism and block it. This is a dangerous procedure as the coils could tear the walls of a blood vessel or of the aneurism and cause further bleeding. It was though, a huge success and Charlotte was transferred to intensive care after about 4 hours to recover.
Over the next 36 hours, Charlotte came out of her coma and started to come round. The first thing she did was to whisper to me to tell everyone to be quiet as she was trying to sleep! It was wonderful to hear her voice and chat with her. She was starting to recognise people and speak and try to sit up!
Things however, went from bad to worse as her condition deteriorated badly and quickly. Charlotte became very agitated and difficult to understand. She had stopped speaking and was making a horrible, guttural, groaning noise. The surgeons rushed her out for a CT and I got the worst news I will ever hear in my life. I remember the surgeon having to hold on to my arm as he told me she was having massive strokes and that this was the time to call my family to be there. I ran out of the ward to ring home for someone to get Megan out of school and get her to Leeds immediately as Charlotte wasn’t expected to survive this.
Every singe member of Charlotte’s family descended on Leeds and waited with me in the hospital coffee shop for hours while the team worked to save Charlotte yet again. I had been warned that they may have to remove part of Charlotte’s skull to relieve the pressure and that there was a lot of damage already present.
After another gruelling 4 hours, I got a call to say Charlotte was back on the ward and ran down the corridors to Intensive Care. The surgeons had managed to save Charlotte without needing to remove any of her skull however if her pressure continued to rise then that was still a possibility. The next six hours, I was told were crucial.
Charlotte made it through the night and was in a coma for the next couple of days to allow her brain to rest and recover, however it didn’t look good. There was a lot of brain damage and the next few days would tell us how much of that was permanent.
After Charlotte woke up from her second coma, it was very different to the first time. She wasn’t even blinking let alone speaking. She just stared and had to have artificial tears applied to keep her eyes moist, be turned regularly to prevent bed sores and have her mouth mopped as she constantly dribbled, unable even to swallow. This, I was gently informed, was probably how I was taking her home. Charlotte had suffered significant damage to a lot of her brain which would mean she wouldn’t be able to respond to me or recognise me, she wouldn’t speak or walk. I was devastated to see my happy, vibrant, outdoor loving, sporty girl just lying there staring at 7 years old. It wasn’t fair!
A wonderful intensive care nurse then offered to let me get into the bed with Charlotte so I could snuggle up with her. She helped move all of the wires and got me in with Charlotte and put the sides up on the bed so I didn’t fall out. A radio was playing as Charlotte loves music so in case she could hear anything we had it playing for her. I waffled nonsense at her and occasionally put myself in her eye line to pretend she was looking at me. Adele’s Rolling In The Deep came on the radio and it nearly killed me there and then. This was a song which Charlotte and I used to sing around the house and because I was ‘trapped’ in the bed and didn’t want to cry in front of Charlotte, I sang it to her ...and she smiled.
The child who wasn’t there anymore SMILED! From wherever she’d gone to, she heard me and she smiled. The nurses ran over and looked as shocked as me! SHE SMILED! It took a good hour or two to get her to do it again but when she did it, she was definitely responding to the things I was doing; singing, being daft, putting on silly voices etc. I ran to the shops and bought 35 story books, every piece of neon coloured anything I could find (bobbles, tops, bags etc) and some little LED flashing butterflies and sat by her bed for 18+ hours a day reading in mad voices with the brightest coloured things on and the LEDs flashing gently in front of her to try and stimulate her and get that smile again. And it worked. She would smile more and more frequently and then. .. as I was reading her favourite story, The Gruffalo and got to a particularly crackers voice .. SHE LAUGHED!! A proper, little girl “Oh Mum, you are silly” giggle!
For the next six weeks, bit by bit, she came back from wherever it was that she went and through her determination and sheer hard work she sits next to me as I type this, in her school uniform going through a workbook in a magazine waiting for her tea!
She is still a very poorly little girl and has many, many issues. She has learning difficulties and is partially sighted. She has quite pronounced memory issues and is weak down her right hand side but you just try and stop her learning everything again and catching up to her friends! And all with a smile on her face ...
There is far more to Charlotte’s story and I will write about it all at some stage but for now, I want people to know about Charlotte. To know that childhood strokes exist and to know to never, EVER give up hope, which funnily enough, is Charlotte’s middle name!
You can follow Charlotte’s progress at www.charlottesamazingbrain.blogspot.co.uk
Follow Leila on Twitter: @LeilaNeve
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Latest posts by Tania Tirraoro (see all)
- What’s a PRU to you? Busting the myths about alternative provision - November 19, 2019
- SEND Tribunal trial extended – but it needs more than just time to be a success - November 5, 2019
- Launching the SEND Community Alliance: An independent campaign group - November 1, 2019