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meningitis & septicaemia can kill in hours!

People who are faced with meningitis and septicaemia have to act fast to help save a life.

Elizabeth Mimpress

Meningococcal disease at 13 months at time of infection

Meningococcal disease

A normal Saturday...23rd April, 2005. Bizzy at 13 months had woken with just a slight temperature and a snotty nose. There was nothing to raise alarm, she just wanted to sleep.

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. 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 threw us in the ambulance, and warned us we were going to go fast. 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. Our baby was so so gently laid on the bed, like she was made of china. I saw her clothes being cut off, 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.

To this day we do not know what they did for Bizzy. Nor do we want to. So we sat in the relatives' room, 'our' nurse giving us regular updates.

Suddenly, I NEEDED to have Bizzy baptised. I cannot explain it.

Then our other daughters, Lily and Eleanor, arrived, so we could all be given prophylactic antibiotics, just in case. Then we were allowed to see Bizzy.  She was hooked up to various machines. Nothing prepares you for seeing your baby on a life support machine.

At some point that night, we were told they could not do anything for her there, she needed specialist care, and they were sending her to Great Ormond Street Hospital.

They transferred Bizzy onto mobile life support systems, waited until she was stabilised, then made preparation to set off. They told us one of us could go with them, but 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.

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. It came to figure quite largely in our lives, that song.

Bizzy was in the isolation room in the Paediatric 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. My consolation is that Bizzy was too young to remember anything.

For the first few days we were told it was 'minute by minute'. 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.

When Bizzy had turned a corner, her doctor advised us to take photographs, so we could explain everything to her when she's older.

A day or so in, they told us they would have to pump lots of fluid into Bizzy, and because they couldn't gauge how much was needed, the excess would flood into her tissues, making her swell up. She was so swollen, 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. Could she hear us? I don't know. But when they reduced the 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 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. Then it started to pull away from her body. It was at this time we thought she might lose her right leg. It was also at this time 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 too 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 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'.

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. After another week, Bizzy was transferred to Broomfield Hospital, to remove the dead tissue, then dress it with donor skin to stabilise her wounds before her skin grafts. A week later, Bizzy had her skin grafts, and another week later, the staples were removed. She was almost ready to come home.

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. 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 six weeks in hospital and three operations, and arranging for community paediatric nurses to come in every day to change her dressings, our baby came home. Our family was complete once more.

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.

But, sometime in August, 'it' hit us. Terrible, vivid nightmares, panic attacks, feelings of utter dread and helplessness. 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. She has no idea, and I am thankful for that. And for the most, we too are fine. But sometimes, a certain sound, 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. Simply bad luck. But we had the good luck to have the medical care and yes, the miracle that Bizzy needed.

Read a fuller version of Elizabeth's story


TANYA MIMPRESS
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