Family's diary of a nightmare

THURSDAY, JUNE 17

What started out as any other day turned into every parent's worst nightmare.

Pam noticed Charlotte was slightly off colour and not her usual happy self, which was not particularly disturbing considering we were expecting teething to start any day.

But by mid-morning a small blemish appeared on Charlotte's neck and Pam immediately recognised it as this evil disease.

She rushed to Ostend Medical Centre where staff confirmed the worst. I arrived 10 minutes later by which time Charlotte was covered in small spots.

Staff administered penicillin and the Westpac helicopter flew us to Starship. By the time we arrived, half an hour after first discovering the spots, Charlotte was purple from head to toe.

She was going into toxic shock and her body was shutting down. Her extremities, hands and feet, were now black as her system tried to protect her vital organs. Every cell was breaking down and bleeding into the next.

We looked on helplessly as a team of 12 doctors and nurses fought to bring the poisoning under control and plug her into machines that would do what she no longer could by herself - live.

We were told that she probably wouldn't make it, that by the time the spots were appearing the damage was done.

FRIDAY, JUNE 18

Day two and the plastic surgeons confirmed that if she lived at all, Charlotte would lose both her legs below the knees and most of her left hand as gangrene had set in.

Charlotte was unrecognisable. Our perfect, healthy baby girl was devastated by this diabolical disease.

She was swollen and purple, her extremities black and dying.

We were racked with guilt, swamped by fear and angry with a God that would allow such innocence to be subjected to such evil.

SUNDAY, JUNE 20

Charlotte's vital signs are still not normal but she shows some improvement. She has not yet stabilised and her skin has blistered badly and her limbs are wilting.

She has had multiple blood transfusions, untold lifespan-threatening drugs and only breathes because of a machine.

The worst is yet to come as we see our sweetheart chopped down and losing her limbs. She will require skin grafts to 80 per cent to what is left of her tiny body.

WEDNESDAY, JUNE 23

We celebrate Charlotte's seventh month with a move from intensive care to the high-dependency unit which is a positive move, but the battle against meningococcal septicaemia continues.

She is fighting terrific fevers, cries out in pain and is facing invasive investigation by doctors, nurses, plastic surgeons, orthopaedics, pain specialists and nutritionists.

She makes an unscheduled trip to theatre when the three lines in her jugular become blocked, limiting the flow of pain relief and hindering the extraction of blood for crucial twice-daily analysis.

FRIDAY, JUNE 25

Charlotte is awake now but still not stable. She fights for every machine-assisted breath and her pain is evident and a long way from over. To see such suffering in one so young is heart-wrenching and traumatic. She continues to be fed intravenously through her nose, direct into the small intestine, bypassing her brutalised stomach.

SUNDAY, JUNE 27

A CAT scan has revealed some minor blemishes on Charlotte's brain which may or may not affect her.

We might not know this until she is much older and at this point we have to take things hour by hour, day by day without thinking too far ahead.

The alternative is too painful and counterproductive at this point.

Charlotte could still die at any moment but if she lives she will have a long, long road to recovery.

She will never experience the joy of unassisted walking and running, tying up her shoes, playing guitar with daddy or other tasks we all take for granted, so we hope she has the ability to develop her intellect.

After the pain and mutilation is over and whatever the outcome, we know Charlotte has already touched many hearts. It's up to her and God now - be strong our beautiful baby.

KILLER DISEASE

* Meningococcal disease is a bacterial infection of the throat that can be transmitted by close contact.

* Many carriers do not become ill but the disease kills 4 per cent of those who contract it, often within 24 hours, and seriously disables another 20 per cent.

* Infants often get gangrene and some lose both hands and feet.

* New Zealand has one of the world's worst rates of the disease, with an average 16 deaths a year.

* Since 1991, 218 have died from more than 5300 cases.

Herald Feature: Health system

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