Meningococcal Awareness Week: What you need to know.

By LEANNE WEYMARK-COTTER

Danielle, my 14 month old baby girl, woke up sick, vomiting with a high temperature in the middle of the night. I gave her some paracetamol but she couldn’t keep that down.  She had been sick with a throat infection two weeks earlier and I thought it was that again. I was wrong.

In the morning I lifted her up out of her cot and she couldn’t lift her head up, couldn’t lift her arms up to me. She was limp. I took her straight to the Doctors, he took her blood pressure and called an ambulance and she was taken to Shoalhaven Hospital. She made it, just. On arrival she had no blood pressure, had stopped breathing and had to be resuscitated. I was taken into a room away from the usual emergency area, and away from my baby.

I can’t remember a lot of what happened at Shoalhaven Hospital except that she had very light purple blotches on her torso, front and back that kept coming and going. And her left arm was starting to go grey. Then, shortly after, she started to decline rapidly. All of her veins began to shut down. She needed to be airlifted to Camperdown Children’s Hospital but it took hours to stabilise her for the flight. I watched her being put into the little red helicopter and my heart just sank. I felt like it was going to be the last time I saw her alive. She was being taken away from me.

I finally got to Sydney and found the Intensive Care Unit and walked in. My baby was lying on a bed on the other side of the room and her arms and legs were black and she was so swollen. She had so many tubes and infusions running to her. I don’t remember much after that, but at some stage one of the Doctors took me outside and sat me down. He told me that they thought Danielle’s had meningococcal disease and that she probably wasn’t going to live. I hadn’t heard of meningococcal disease. I had no idea what he was talking about. He tried to explain it to me but it didn’t really matter at the time. The only thing that mattered was that my beautiful baby girl was only with me for 14 months and she was going to be taken away from me forever.

Eleven days after being admitted she had her left arm amputated through her elbow. That was the first of between 70 and 80 operations to date. After that she had her four fingers, palm and half of her thumb off her right hand amputated. It just went on and on. She had her toes amputated, and skin grafts on her arms and legs. Every time she went into theatre we didn’t know what she’d come back with or if she’d come back at all. She had central lines changed and skin grafts done again because they didn’t take the first time. Danielle had some seizures, and she had some swelling around her brain also.

In 1999 Danielle had her big toe (one that she kept) grafted onto her hand to give her a grip with half of her thumb. She’s had many leg surgeries to lengthen the bones because they had stopped growing when she was 8 as the growth plates were affected so badly. But she did get to keep her legs so we’re happy about that!

She’s now 20 and is training hard to compete as a Para Dressage rider in the 2016 Rio Paralympics! She has never let her disabilities get to her or let her situation stop her from doing anything like any other child! She’s holds an Australian record in 50 metre butterfly for her age and classification and if anyone can compete at the Paralympics, she can!

This Meningococcal Awareness Week, Meningococcal Australia is urging all parents to be aware and SHARE the facts with family and friends to debunk the misconceptions around meningococcal disease.

An online survey conducted with 400 parents of Australian children aged 0-17 revealed more than half of parents (55%) are unaware there are different strains of meningococcal disease. Three in four are unaware meningococcal B is the most common strain, and that currently available vaccines don’t protect their children against all strains of the disease.

Leanne Weymark-Cotter of Meningococcal Australia said the survey reinforced the anecdotal evidence the organisation gathers every day; “Meningococcal disease can be devastating and we believe it needs to be better understood by parents, even though it is not a simple story to tell.

“Sadly, it is in children under five years where the incidence of meningococcal disease is highest. We encourage parents to understand more about the disease; know the signs and symptoms and act quickly if they suspect meningococcal disease. Parents should also ensure vaccinations are up to date.”

Professor Robert Booy, Head of Clinical Research at the National Centre for Immunisation Research and Surveillance (NCIRS), said that the introduction of the meningococcal C vaccine on the National Immunisation Program (NIP) in 2003 has demonstrated that prevention is the most effective defence against this aggressive disease with meningococcal C cases in 0-19 year olds reduced from 88 in 2002 to zero in 2011.

“However, the reduction in meningococcal C infections does not mean we can be complacent. Unfortunately we still see between 200 and 250 cases of meningococcal disease every year, and the great majority of these are caused by meningococcal B.