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
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
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
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
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
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
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.
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
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
As it turned out further "debridement of tissue and amputation"
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.
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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