This is the story of our baby's fight against meningococcal septicaemia.

I have written this to pay tribute to my wonderful daughter, her bravery, and her sheer bloody mindedness! It is also written to inform, inspire, and maybe to give hope. This is also dedicated to everyone who has been affected by meningitis and septicaemia, to those who survived, to those who didn't, to those that could do nothing but will their loved ones to live.

A normal Saturday...23rd April, 2005

Bizzy had woken with just a slight temperature and a snotty nose. As I cleaned her up and gave her a cuddle, I mentally ran through the checklist. There was nothing to raise alarm, and Bizzy just wanted to sleep. As a nasty cold had confined me to bed a couple of weeks before, I simply thought "oh no, she's got it now, poor baby"...so we tucked her in, and checked on her every half hour.

The Rash, The Rash, my baby's got The Rash

All day she was under the weather, but ok. Slight temperature, but quite happy. Until just before 6.30pm

I will never forget seeing my husband, Brian, running down the hall, with Bizzy in his arms, screaming at me to call an ambulance, our baby quiet and still, with a purple and black rash spreading all over her face and jaw. The world stopped, then started spinning. Brian fed water to Bizzy while I dialled 999. To the emergency operator's credit, they understood my shrieks of "The Rash, the Rash, my baby's got the Rash" perfectly, and dispatched an ambulance straightaway. They asked if anyone could stand outside, and signal to them as soon as they turned into our road, so Brian stayed with Bizz while our eldest, Lily, and I stood outside.

At that point, I couldn't look at Bizzy. I was too scared, for so many reasons. So I stood outside, shocked to the core, chainsmoking. Then Lily said "look mum, an Angel feather!" I looked down, and there, lying on the floor between my feet, was a pure white feather. At that moment I was calm. My head might have been gibbering all kinds of dreadful things, but my heart saw that feather, and I suddenly knew that Bizzy would be ok, that someone was looking after her. I am not religious, but from that moment, I had a peculiar faith that everything would be ok.

Even though every sign said otherwise. Seeing two burly paramedics pale at the sight of your daughter is not a good omen.

Station to house to hospital in under 10 minutes

They threw us in the ambulance, and warned us we were going to go fast, and to buckle up. You know when a cartoon vehicle rears up on it's back wheels then takes off like a bat out of hell? It was like that. As the blue light and sirens started, one paramedic injected Bizzy with "the daddy of all antibiotics", while the driver floored it and radioed ahead. On arrival at our local hospital, it must have been 10, 15 medics who greeted us, armed with tubes, needles, pipes, machines. We were rushed into a corner, and our baby was so so gently laid on the bed, like she was made of china. I saw her clothes being cut off her, and they asked me to hold her lifeless hand while they did what they had to do. Then a wonderful nurse took us away, while they moved heaven and earth to save our baby.

The Relative's Room

To this day we do not know what they did for Bizzy. Nor do we want to. For a long time I thought it would dispel ghosts, but now I realise, it doesn't matter. They were successful, that's all anyone needs to know.

So we sat in the relatives room, 'our' nurse giving us regular updates, our relatives calling us to ask if we knew what was happening, as they'd had an odd call from my nan. Calmly, I told them the score. Our mums arrived, with one of my brothers and my ex-and-current stepdads. My baby brother looked shellshocked.

Suddenly, I NEEDED to have Bizzy baptised. I cannot explain it. As I said before, I am not religious, and Brian is an Atheist, but Bizzy had to be baptised. Poof! It was done. I didn't realise the significance of the speed in which it was done for a few days. I guess I didn't want to.

Then our other daughters, Lily and Eleanor, arrived, so we could all be given prophylactive antibiotics, just in case. Seeing my girls in the hospital, it felt like I hadn't seen them for years. I hugged them, and couldn't let go. It was then that I realised my top was inside out, but no way could I put it right. An inside out garment is good luck. And we needed luck.

Not there, that's where the really sick children go

Then we were allowed to see Bizzy.  She was hooked up to various machines and things. I had known what was wrong the moment I saw the rash, and due to my exstensive magazine habit, I knew that it was common practice to put meningococcal septicaemia victims into a medically induced coma, so their bodies can use all their strength to fight. But nothing prepares you for seeing your baby on a life support machine. And yet, I remember that all of us were so calm. Of course, now we know it was shock, but shock enabled all of us to do what we had to do. We now understood the phrase "Critical but stable".

At some point that night, we were told that they could not do anything for her there, that she needed specialist care, that they were sending her to a London hospital. Immediately, I was thinking "Not Great Ormond Street, not Great Ormond Street, that's where all the really sick children go". When, an hour or so later, they told us that Bizzy was indeed being transferred to Great Ormond Street (henceforth known as GOSH), our world stopped again.

All we could do now was wait for the transfer team to arrive. They arrived in a St John's Ambulance Paediatric Intensive Care Transfer ambulance - until that point we thought that St John's only did public events and first aid training - then they transferred Bizzy onto mobile life support systems, waited until she was stabilised, then made preparation to set off. They told us that one of us could go with them, but that if they needed to work on her we would have to stay out of the way. We decided that we didn't want to get in the way of anything they had to do for our baby, didn't want to see it, and so followed in my mum's car. Before we left, my little brother gave Brian his jacket, and stuffed money in the pocket. "You'll need that" he said. This was the one of the first random acts of kindness that kept us going in the days ahead.

Something Beautiful

The silence was deafening, so I asked mum to turn the radio on. The same song that Bizzy was born to was playing, Something Beautiful by Robbie Williams. Was it a good or bad omen? It came to figure quite largely in our lives, that song.

We got lost, so Brian and I jumped out and flagged a taxi down. As we paid the fare, the cabbie wished us luck. I wondered why he did so - it took me a few weeks to realise that you don't speed across London to GOSH at 2am unless it's an emergency.

Bizzy was in the isolation room in the PICU (Paediactric Intensive Care Unit) hooked up, wired up, tubes, canulas, drips, machines, oh so many things. All breathing for her, beating her heart for her, healing her. But now we were well and truly in shock (to the extent that a few days later I had to ask the Family Liasion Sister if it was ok to cry). But like I said before, shock is a wonderful thing. It breathes for you, it lives for you, controls you like an automaton, so all you have to do is will your loved one to live. My consolation is that Bizzy was too young to remember anything, that all of this will be no more than an abstract fairy tale to her.

But we remember.

We've had the snipers, the front line, now the SAS are going in

For the first few days, we were told it was 'minute by minute'. But our wonderful friend, Shock, doesn't let you understand what they are saying. So you say "Minute by minute? Yes, anyway Elizabeth, when you are better we'll go on holiday, when you are better, we'll have a party." 

Anything they wanted Bizzy to do or be, they had a machine for it. Want to lower her temperature? This'll do it. Want to raise it? You'll need this contraption. Initially, the thought of my baby having to have a catheter was hideous - but they explained that the kidneys are usually the first organ to fail, so they had to monitor her urine output. They explained everything to us, always treating our baby - and us - with respect and dignity.

They showed us how to tube feed Bizzy, how to put the silicone gel on her eyes to stop them drying out, how to clean her with sterile water. Being able to do these things brings some comfort.

Random Acts of Kindness

Dad rang from Australia several times, and was able to get his tickets home changed. Our family and friends rallied round. Our mums arrived first thing Sunday morning, bringing clothes and Bizzy's 'Sucky Moo', and Poggy Doggy, who looked after me when I was tiny, and all of my babies. I couldn't let Bizzy face this without that tattered little dog.

During Bizzy's time in hospital - six weeks, altogether - we were constantly humbled and amazed by the kindness and generosity of everyone. Family, friends, strangers. My cousin who trooped across London every day to see Bizzy and support us, bringing food and clothes, then going to our flat every night to feed our cat and keep on top of things. Brian's sisters, who brought us food. My aunts, who looked after our other daughters. My brothers, who brought us food and money. All of our family, giving us emotional and practical support. All we had to worry about was our baby. We will never be able to thank any of them enough.

When Bizzy had turned a corner, her doctor advised us to take photographs, so we could explain everything to Bizz when she's older. We took a couple, then MEMORY CARD FULL flashed up, so we went to get the card developed to we could empty it. When we picked up the photos, the guy in the shop wished us all luck.

We had parents accomodation (GOSH has rooms for parents with children in the PICU), and found out the pop star who's song was so pertinent to us pays a large amount every year to keep it going. That made us cry. We'd see a sign saying, say, that the people of Wiltshire had paid for this bit of equipment, that the people of Berkshire had paid for that lift. And their kindness would make us cry.

But we couldn't cry for Bizzy. I don't think we would have been able to stop.

A strange place to be, a plastic bubble

A paediatric intensive care unit is a strange place to be. Surprisingly, it's a place full of hope, where you are all protected from the outside world, and the only thing that matters is your child. You know your baby isn't in pain - morphine and goodness-knows-what-else sees to that. The machines tell you that her heart, her breathing, her blood pressure, it's all doing what they want it to do. If anyone asks you what's happening, you recite it all like you are describing the plot of a film - like it's not really happening, I suppose. Because it is too much to take in.

So family and friends visit, and you go and have something to eat, or take a shower. Because you HAVE to eat. You HAVE to go to the toilet, and even though you can't sleep, you HAVE to sleep.

The hardest things to see

A day or so in, they told us that they would have to pump lots of fluid into Bizzy, and that because they couldn't gauge how much was needed, the excess would flood into her tissues, making her swell up. Even though we could visualise this, actually seeing it was awful. She was so swollen, that it looked like the slightest touch would burst her. She didn't look like our baby. Only the thought that she was in a coma, on morphine, and couldn't feel this calmed us. We ached to hold her, but with about 15 machines attached to her, this was not going to happen. So we would sing to her, having once heard that people in a coma can hear you. We sang to her, told her how she was going to get better, just talked to her.  (Could she hear us? I don't know. But when they reduced the coma inducing drugs to bring her back to us, she wasn't responding as well as they wished. They gave her brain scans, heart scans, she was still away from us. So we went out to buy a copy of Something Beautiful (which had followed us wherever we went!), and after a couple of plays, she woke up, she came back. Now to this day, if we play that song, she stops whatever she is doing, stands in front of the stereo, listening intently. At the end of the song, she goes back to whatever she was doing before. It certainly means something to her.)

Wherever the rash had been, killed her flesh. Necrotic tissue. Then it started to pull away from her body. It was at this time that we thought she might lose her right leg. It was also at this time that we realised that whatever shape or form she was in, we just wanted our baby back home with us.

When the dead tissue started really pulling away, it looked like her leg was hanging on by a thread. We were to scared to touch her, so frightened of hurting her, and, yes, it was scary to see. Bizzy wasn't at all bothered by it - she was still on morphine, and, being a baby, had no concept that her leg being like that wasn't the usual. At this point, we were advised to take photos, study them, get used to it. Our flinching every time we saw it wasn't going to do anyone any good. So we took the pictures, looked at them until desensitised, repeating the words "it's just flesh".

(I will not publish them here, on grounds of privacy, sensitivity and taste. )

Always smiling

Two weeks after first falling ill, Bizzy was transferred back to our local hospital. And from when she first woke up, she never stopped smiling. But there was still a long way to go.

When we got back to 'our local', people who had worked on her that night started coming in to see her. And they all said the same thing. That they didn't think she was going to survive. One of the paramedics told me (a few months later)  that they thought Bizzy would die before they got to hospital, that she is a miracle.

Bizzy smiled at them all. She dealt with everything with a grace I can only dream of having. While we were there torn between pride in our brave, brilliant daughter, and thinking "The shock has passed, we're getting on with things, will It 'hit' us soon?"

Operations

After a week at our local, Bizzy was transferred to Broomfield Hospital, to have the necrotic tissue removed, and have skin grafts. By this time, Brian and I were taking it in turns to be with Bizz, so we hadn't really seen each other for a couple of weeks. The night before Bizzy's first operation, we decided that as she would be 'nil by mouth' the night before, we would let the nurses deal with that temper (!!!), and get a room at a nearby B&B, then get back before she went into theatre.

We were allowed to stay with Elizabeth until the anaesthesia had taken effect, and as we watched them place the mask over her face, my phone went off. Floor open swallow, but the theatre staff giggled sympathetically, which certainly broke the ice. So Bizzy being ready for surgery, we ambled around the hospital grounds, waiting for the call.

Seeing my baby in the recovery room, the unshed tears finally came.

This operation was to remove the dead tissue, then dress it with donor skin to stabilise her wounds before her skin grafts. I had asked if they could take the skin from me, and was met with a verrry patient "no". I still do not know what is weirder - that a dead person's skin was on my baby, or that it was stapled on. Needless to say, the fact that a person unknown had donated their skin to my baby made me cry.

A week later, Bizzy had her skin grafts. Again, rather than risk the Wrath Of Hungry Elizabeth, we scarpered to a B&B the previous night. I remember, the night before this second operation was the first night of 2005's Big Brother. Again, we were back with Bizzy when she went into theatre, having remembered to turn off my phone this time. A week later, the staples were removed. She was almost ready to come home.

The Homecoming

Before Elizabeth came home, I had to change the flat around. The last time she had been here, two paramedics had been gazing on her with terror. I couldn't have that room like that ever again. So our bedroom became the living room, the living room became our bedroom. We scrubbed, we cleaned, we tried exorcising the ghosts of that night. We threw away her cot mattress, bought a new one, scrubbed and scrubbed and scrubbed: to eradicate a bacteria that we knew by now couldn't last long outside the human body? Maybe. Probably.

So on June 3rd, 2005, after 6 weeks in hospital and three operations, and arranging for community paediatric nurses to come in every day to change her dressings (as opposed to a 2 hour round trip to Broomfield every day!), our baby came home. Our family was complete once more.

Heroes

How do you thank someone who has saved your baby's life? You know those NHS adverts where they say "it took 200 people to get Billy back on his feet" (more or less!)? Well, we estimate that at least twice that had a hand in saving Bizzy. So how do you thank 400 people? "thank you" seems so inadequate. But Thank You is all we have. From the paramedics to the cleaners, to the nurses, to the doctors, to the porters, to the surgeons, and everyone in between, not forgetting the emergency services operator who make sense of me repeatedly squawking "The Rash!", and to our family, friends and random strangers To all of you...thank you. You work miracles every day. Be proud of yourselves.

Aftermath

Bizzy needed daily dressing changes for several weeks. She has severe scarring, but she is here. Against all odds, she escaped needing any amputations, her brain scans came back fine, her hearing tests were also fine. She refers to her scars in a matter-of-fact way, and she is now a beautiful, intelligent and vivacious toddler.

Lily and Eleanor said they wanted to be christened, so the hospital chaplain who baptised Elizabeth on that dreadful night did the honours in the chapel. We had a big family party afterwards, to try and bring some closure.

But, sometime in August, 'it' hit us. Terrible, vivid nightmares, panic attacks, feelings of utter dread and helplessness. Tears, like having permanent PMT. A headache becoming, in our minds, another attack by the meningococcal bacteria. So we ended up calling the Meningitis Research Foundation helpline, who helped us so much, and put us in touch with another parent with a similar story. (Lily and I are doing a charity run to try and say thank you to them.)

Bizzy is oblivious to what happened to her. She has no idea, and I am thankful for that. And for the most, we too are fine. But sometimes, a certain sound, or phrase, or even if the light is a particular hue; then we are straight back in that room, watching a machine breathe for our baby.

But we are all so lucky. She is here. Never once did we think "Why her?"  Why not her? It was nothing personal. Even though it felt like an alien force, breaking into our life, and trying to kill our baby - it was nothing personal. Simply bad luck.

But we had the good luck to have the medical care and yes, the miracle that Bizzy needed.