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The story of "Baby" Charlotte - a meningococcal survivor.
As told by her father, Perry Bisman in 2005

June 17th 2004 will always be indelibly etched in my memory as the day that started like any other and ended up as every parents worst nightmare.

"Baby Charlotte" as she is now referred to in the media has survived against the odds with the most horrific injuries following her battle with meningococcal septicaemia.

I went off to work at the Waiheke Jazz Festival where I was employed as Communications Manager.

Charlotte's mother Pam, rang me about 8.30am just after I had arrived and said baby had thrown up in the night and wasn't her usual happy self. Although concerned, we were expecting teething to start any day and it could have been anything.

As Charlotte had never been sick before in her six months of life, not even a sniffle, it was more of interest than panic at that point.

10.30am and the phone rang again. This time Pam was hysterical. I could hardly understand what she was saying but I managed to get, "Your baby's got meningitis!"

"Oh my God!" I jumped up from my desk. "I'm on my way." I couldn't get out fast enough. The short car trip was a test of patience and traffic laws.

On arrival at the Ostend Medical Centre, Waiheke Island some 5 minutes later I raced past reception yelling "Pam! Pam! Where are you?" It didn't take long to find them. There was a pulled curtain and lots of anxious voices behind it and Pam was wailing uncontrollably.

Charlotte was naked except for her nappy and already she had small, barely noticeable spots all over her body.

Only 10 minutes earlier Pam had seen just a couple of spots on her neck and assumed the worst rushing her down to the medical centre.

The medical staff were desperately trying to find a vein to administer penicillin which was proving to be very difficult with Charlotte being so small. An adult sized oxygen mask covered her entire face. She vaguely looked up at me with her eyes rolling back in her head. She was in the first stages of going into a coma.

WESTPAC RESCUE HELICOPTER MEDIVAC

A helicopter was called and St Johns ambulance drove us to the high school fields where the rendezvous was scheduled.

In the air I knew it was serious but still had no idea just how bad. I guessed because we'd got on to it as soon as possible medical crews would be able to arrest the spread and Charlotte would be ok after a short hospital visit.

The rescue helicopter paramedics were fantastic. They warned us it was very serious and there would be a lot of people giving us a lot of information when we landed and to try to stay focused and take it all in.

My knowledge of the disease was limited to say the least. I knew the word meningitis but knew little of meningococcal. I remembered my mother always saying "Don't put your head under the water in hot pools or you might get meningitis." She was presumably talking about the amoebic version which I knew could cause brain damage and so now that was my first concern.

I had no idea this disease could lead to the death and amputation of limbs let alone the devastation I witnessed Charlotte's little body being put through.

EMERGENCY ROOM

The emergency team on arrival at Starship worked frantically to stabilise her. They were running around instructing each other in anxious tones. None of this was putting me at ease and it was slowly dawning on me just how serious this situation was.

They resuscitated her twice in that first half hour.

The beeps and noise of the monitors made things worse as at that point I didn't know what all those warning sounds were about and it seemed to be a cacophony of doom. I rang my mother.

When Charlotte was finally connected to all the machines and they had managed to insert an intravenous line or lumber directly into her knee, which again proved difficult due to her tiny stature, we were rushed through from Emergency to PICU where we spent the next 12 days watching her go from bad to worse.

P.I.C.U. PAEDIATRIC INTENSIVE CARE UNIT

With all the fluids, blood transfusions, antibiotics and nutrients entering through various unnatural means Charlotte puffed up like a balloon. She was unrecognisable as our little girl with her entire body including her face turning bright red then blistering over time, darkening into hard crusty scabs.

She required suction with fluid on the lungs, her stomach ulcerated and burst leaving a giant blood clot that affected her ability to absorb nutrients from her nasal tube. I/V nutrients were established.

We watched each day as the death moved up her body. At first her finger tips and toes turned from red to black and wilted like dried flowers. In those first few days I thought maybe we'd be lucky if she just lost her fingertips. At least she'd be able to still grip a pen or paintbrush. She'd never play guitar with daddy again (we'd already had our first jam just days before!).

But as each day passed, the damage became more obvious. The blackness moved slowly up her palms into the forearms and the same was true for her legs.

By the time she started to blister she was a complete mess. Even though she was in a medical coma it didn't stop her crying out when she was moved to clean her bottom. She was in excruciating pain with infection in her bones and staff likened the pain to third degree burns or worse. In fact the entire treatment is effectively the same as someone who has suffered huge burns.

In Charlotte's case about 80% of her body was affected, her upper back being the only place that seemed to survive unscathed. Our plastic surgeon added to the joy by telling us they would take skin-grafts from her back for her upper arms, legs and bottom so in effect no part of her would be left untouched by this evil disease.

H.D.U. HIGH DEPENDENCY UNIT

As if this wasn't hard enough to take, when she finally did come around she was now aware of her constant acute pain no matter how much morphine and ketamine she was given. She had a background drip of 5mg of morphine per hour and 2.5mg of ketamine and had to be given multiple bolus' (extra doses) during movement usually to clean her up after passing a motion.

This was critical to clean her immediately because her bottom was so badly affected by the disease. As the demarcation between good and bad flesh became more apparent huge puss-filled gaps appeared between the two as the good flesh pulled away from the bad just through movement.

Helping the nurses hold her on one side while they cleaned her up the best they could was a nightmare. Charlotte would scream throughout the procedure and almost pass out in her excruciating pain.

Then we would cake her butt in Silver Sulphadiazine Chlorhexidine Digluconate (or SSD cream as staff referred to it). Liberally applied like icing on a cake about half a centimetre thick to minimise bacterial infection.

Every third day her bandages needed changing as they became soiled. This meant going back to theatre and under a general anesthetic as it was too painful to do awake. It became an endurance test for both baby and parents as we worried every time she went under. She was never particularly happy afterwards as the pain returned and the bewilderment of not knowing what was going on. She started to get suspicious of anyone wearing a funny hat as they do in theatre. Eventually she would get nervous whenever her bed was wheeled down the corridor knowing something terrible was about to happen.

We eventually insisted on a pre-med each time which put her at ease. As our "pain specialist" pointed out it was like having six or so tequila's which would have been nice to share with us as by now the stress was taking it's toll on the parents.

By the beginning of week three, Charlotte's catheter became blocked. This was a twin tapped lumen (lure) with a very small diametre I/V tube running into her neck for drugs in and daily bloods out. After a week this required removal due to blockage and a larger 'Hickman Line' inserted which was an hour and a half of theatre time as it threads in from below the side of the chest up to her neck then loops around and down towards her heart. We were told this had a much longer 'use-by' date and would not need to be replaced again. This did however become blocked and was eventually replaced with another adding even more theatre time under a general anaesthetic.

AMPUTATION

We knew amputation was coming. Our plastic surgeon Dr Glen Bartlett based at Middlemore's KidzFirst Burns Unit had been brought in from about day 3 to see Charlotte. At that early stage he couldn't tell us how much was going to have to go. We all had to wait for the demarcation to become clearer and he was reluctant to say anything should it turn out to be worse.

I basically had to put the words into his mouth as a "worse case scenario" and could see I was coming close to that and then some.
Our orthopaedic surgeons under the guidance of Head of Department Professor Sue Stott made it clear there was never a good time to discuss the procedure but it had to happen or Charlotte would die. The day before surgery we had a sit-down meeting with them. Pam eventually broke down and had to leave. I braved the gory details to stay informed. I kept thinking of what the Westpac paramedics had said about taking it all in.

We discussed the difficulties of below and above the joint amputations. By cutting through the bones above the joint the "growth plates" in the end of the bone are gone. Therefore the bone won't grow as the rest of her body does so she will always have infant sized stumps making the fitting of prothesis that much harder. This was not good news. In fact I thought it was the worst news I had heard since I learnt she was going to lose her limbs at all.

Eventually I was handed the consent form which read "Debridement of tissue and amputation as required" which seemed quite surreal. Seven words that would change our lives forever and physically change our baby daughter dramatically.

With shaking hands I signed the form. I wouldn't have done it at all if I thought there was any other way but I was told if she didn't have the dead limbs off she would die.

That night I wept uncontrollably. I was beside myself and we were both having nightmares. It was the hardest and worst decision I have ever had to make and yet there was no choice.

By the time Charlotte went into surgery the next day Pam was saying "Cut that evil disease off my baby and let's get on with it!" I wasn't quite there yet but I understood what she was saying. Get rid of the rot that is causing so much pain and leave us with the essence of our beautiful little girl.

During the eight and a half hours of surgery my cell phone ran hot. Most of our friends and family were bawling down the line having read in the media today was the big day.

Strangely I was remarkably together. The previous night's emotion had helped. I was beginning to come around to Pam's point of view and had resigned myself to the fact we had a severely disabled child.

The surgeons nearly bounded into the room with big smiles on their faces following the eight and a half hour event. By their reckoning it had been hugely successful. They explained they had optimistically removed both legs "through the knee" rather than above, one arm "through the elbow" and the other half way up the forearm.

I was relieved to hear that as this would mean normal growth of what remained of the limbs. They related that her vital signs had been steady throughout and she was recovering well. From a surgical point of view they were very pleased with the results.

Confronting her shortened limbs under heavy bandaging was definitely surreal. Having readied ourselves for this moment we entered Recovery just as she was coming to. She was still under heavy sedation and blue. She got some more morphine and then she got some more.

When Charlotte was more coherent and back on the ward she was actually remarkably calm. Of course at no time did the background pain relief diminish and she had 15 minute bolus' of morphine or as required but she seemed better off without the painful dead limbs. This was a good outcome in that the road to recovery seemed to have begun. I was thankful the worst of the excruciating pain was over.

Over the next few days she required several bandage changes under a general anaesthetic. Each time we would worry and the news about her wounds was not all good.

While her demenour seemed to improve over the week that followed doctors advised she had developed a pseudomonas infection on her right knee and left elbow. The original post-operative assessment that they had "optimistically" removed all they needed to came back to haunt me. I had taken this as a good thing but in reality they meant this was the best we could hope for.

As it turned out further "debridement of tissue and amputation" was required.
This was a major emotional setback for us. We had gotten used to the fact she would have no hands and feet but knowing what coming above the joints meant long-term was devastating. I wasn't prepared for this and fell into a depressive slump.

I foresaw all sorts of anguish with infant sized stumps into her adulthood and the possibility artificial limbs may not be suitable for her at all. This is still a possibility and I try not to dwell on the future too much and am indeed thankful for every day Charlotte is able to give us a smile and be around to make us smile.

So back for another seven and a half hours of surgery to remove the right leg above the knee and the left arm above the elbow. This time post operatively Charlotte was not so good. She didn't respond well in Recovery and took a further two days to come right.

RECOVERY

The days that followed were a mix of emotions.

Her pain relief was slowly lowered and various tubes removed. Thus she had to learn to eat again through her mouth. On top of this difficult transition period Charlotte was teething. She was grouchy and irritated by her new teeth but also the skin-grafts were getting scaly and itchy. In some small way her constant fidgeting and wiggling has kept her leg muscles physically fit and she subsequently amazed us and the physiotherapists during her twice daily therapy sessions at Wilson House on Auckland's North Shore where she resided for a further three months before being well enough to return home one week before her first birthday.

 

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