What was to become the most emotionally challenging and destructive two weeks of our lives started on 3rd February when Faye was rushed to hospital, showing, we now know, the signs and symptoms of meningitis. No one thought she would survive the day, but we knew that our little girl was made of strong stuff and that she would fight hard to stay with us.
She defied the odds in two hospitals and shocked most of the medical staff that treated her, several times! As meningitis took hold, Faye’s tiny body changed and she looked a very different little girl to the one we loved so dearly. What we couldn’t see was the damage that Sepsis was doing to her internal organs and, to put it bluntly, they were failing. It was at this point that we were asked to make the most difficult decision of our lives - to turn off the life support machine that was keeping Faye alive and let her slip away peacefully – a decision that, whilst traumatic for us, was the best for our beautiful daughter.
As a family who had just had their lives destroyed by meningitis, we felt a huge and overpowering need to reach out to other parents, to make sure that they were aware of this destructive disease and to tell them that a vaccine does exist that could prevent their children from the horror that we had just experienced.
In the absence of this vaccine being used outside the tight constraints set down by the Department of Health, we felt it was also crucial to make parents aware of the signs and symptoms of meningitis and the importance of trusting their instincts, should they find themselves being turned away by a health professional, having taken their sick child to them for help. It is a sad fact that even doctors can, and do, sometimes miss the signs of meningitis. Parents must be more confident in challenging and questioning doctors when they instinctively know, as a parent, that their child has more than a cold or flu.
The often cited ‘look out for the rash’ and glass test advice is also one to treat with extreme caution - our experience, and sadly, that of many others, is that a rash may make a late appearance or indeed not appear at all. In Faye’s case, the rash was late showing which meant, by the time doctors had administered antibiotics, it was too late for her – meningitis had already taken hold. The reality is that the earlier your child gets the antibiotics, the better the potential outcome.
To discover that a MenB vaccine had been introduced for newborn babies just five months before Faye contracted the disease, and that she was too old to be given it free on the NHS, was devastating. This was further compounded by the fact that we didn’t know we could have taken Faye to get this vaccination privately.
Faye’s death highlighted the inadequacy of the MenB vaccine programme and empowered us to use her experience as a way to try to protect as many children as possible - the only way to do this is to get the children at most risk vaccinated.
To be ‘armed after the event’ is never a great place to be, but knowing that a little bit of meningitis knowledge could have significantly altered the outcome for Faye, has been hugely motivating in our personal fight against the disease – a fight that took us, and thousands of other likeminded people, all the way to parliament.
Little did we know that sharing images of Faye in hospital would ignite such a massive media response across the UK and that our support for a parliamentary ePetition, calling for the MenB vaccine to be extended to at-risk children, would finish having secured over 823,000 signatures. Nor did we expect to see this issue become the subject of a parliamentary debate!
Sadly, and despite a passionate and coherent argument being put by us and other affected families, medical professionals, MPs and charities like Meningitis Now, the health minister judged that she would not extend the Men B vaccine due to it not being cost effective. To us, a family who only a couple of months earlier, had lost their precious two year old daughter to this preventable disease, this decision was both insulting and devastating.
It’s been a year since Faye died and still children are dying from meningitis. During the debate, the same health minister also promised to publish an important review into the cost effectiveness framework that puts a price on a life and yet we have not seen this. Nor have we seen anything of the awareness programme she also committed to run this winter. When visiting a doctor’s surgery have you seen evidence of this campaign? I definitely have not.
To us, a simple family dealing with the worst possible effects of meningitis, this looks like stalling - perhaps they are hoping we will go away? Well, think again. We of course welcome the news that more children than ever are now protected against Men B and that the cases amongst those who have been vaccinated has halved. But what about those not vaccinated? What about those who are still at risk and those who cannot afford to protect their children privately?
We hope that our actions in bringing Faye’s experience to the notice of parents across the UK, has, in some way, encouraged parents to get their children vaccinated, or at least get to know the signs and symptoms, and that this becomes Faye’s legacy - a legacy where her death has helped to save the lives of other children. For this, we couldn’t be more proud of our little girl.