These are the personal stories told by survivors of meningococcal disease or their families, or by families who have lost a loved one to meningococcal disease.
Each one is different. Each one is moving. Each one illustrates how important early diagnosis and treatment is for this disease.
Support for survivors and families of those affected is available in most states. See Contact for details of the Meningococcal Foundations in Australia.
If you are moved to help after reading these stories, please click here to donate and ensure that we can continue to make a difference.
Amanda Young (1979 – 1997)
Amanda Young was an inspiring young woman possessing many skills and passions, and a much loved daughter to Barry and Lorraine.
Amanda was talented and hard working in sports, academics and music. Throughout her life Amanda excelled in competitive sport and she had a desire to pursue her dream of a future in Environmental Science.
She began her sporting career early, representing the State in Calisthenics in 1986. She attended Gosnells Primary School and in her final year was Head Girl and Dux.
She loved music, learning the flute, organ and recorder and also enjoyed ballet, jazz and tap dancing. As well she loved horse riding, competing in One-Day, Tetrathalons , Hacking and Carriage Driving events. She was also a member of local swimming, gymnastics and calisthenics clubs.
From 1992 to 1996 Amanda attended Penrhos College, gaining an “A” grade in every subject and many prizes along the way. Amanda represented her school in swimming, rowing, equestrian, athletics, cross-country, softball and debating. In her final year she was awarded the Margaret Way Prize for the most outstanding contribution to the College community.
Amanda was able to travel internationally both to compete in sporting events and also to further her studies with trips to Canada, USA, Japan, Moscow, St Petersburg and London during her high school years. She also attended two National Science Youth Forums in Canberra.
She was undertaking studies in Environmental Science at Murdoch University where she had gained Distinctions and High Distinctions and had also studied Architecture and Fine Arts at UWA.
Amanda attended an Inter-varsity Rowing Regatta in Penrith in October 1997, where she tragically contracted meningococcal disease and died at the tender age of 18.
However Amanda’s legacy lives on. Her parents, Barry and Lorraine Young, established the Amanda Young Foundation in 1998 with the aim of reducing deaths in WA from meningococcal disease, and supporting survivors of the disease. The Foundation is also committed to supporting the development of young people into Western Australia’s future leaders.
For more information, visit the Amanda Young Foundation website.
Troy contracted the disease while on a working holiday in London with his girlfriend. The Pocock family lives were turned upside down when they received a phone call from the Chelsea Hospital in London warning them that Troy was in critical condition after contracting the Meningococcal disease.
Troy started to feel ill the morning of December 29th 2001 and he thought he was just getting the flu. It wasn’t until he was so sick vomiting, diarrhoea, high temperature, joint stiffness and the appearance of blotches on his eye lids that Meg realised it was something more serious than the flu, she rushed him to the hospital which was ten minutes away.
Troy was vomiting blood by the time he got to hospital and his condition was critical. There wasn’t much the hospital staff could do, he was placed on life support and administered antibiotics but was to pass away within hours.
Troy’s brother Scott and Meg’s mother flew to London to bring Troy home but didn’t learn of Troy’s death until they were in Tokyo half way to London. They dealt with the cremation and the packing of Troy and Meg’s belongings.
Scott brought Troy’s ashes home in his backpack which sat next to him and Meg all the way home.
Troy and Meg had left on the 7th of October 2001 to venture the world but Troy died on December 29th. On the 9th of January 2002 Meg came home without the love of her life.
A memorial service was held on the 12th January 2002 and his ashes were scattered over the Shoalhaven River.
On the 14th December 2003 which would have been Troy’s 23rd Birthday his friends organised and dedicated a memorial bench at Bangalee Reserve. The reserve overlooks his beloved Shoalhaven River from where his ashes were spread. Many friends have spent a quiet moment in reflection sitting on Troy’s bench and the words inscribed have been an inspiration to many.
The inscription reads “Make each day a magnificent adventure”.
Troy and Meg each went to a different doctor before they left but neither of them were advised to have immunisation against Meningococcal even though the incidence of this disease in London is even higher than Australia.
An immunisation needle would have cost $70.00 which would protect against the C strain, if only Meg and Troy had been told this our Troy would still be here with us now.
Caleb Thorburn (affectionately known as Cal) was born on the 7th of October 2000, our first born child and now brother to Gemyah and Sweeney.
From that day forward Caleb set the pace, boundless in his appreciation for life with stamina to match. Every moment with Cal was fulfilling, abundant, spirited, captivating and well lived. Cal was a happy, confident and cheeky little boy with a fondness for music, all things outdoor, boyish adventure, dancing, ball sports and assisting around the house, readily equipped with a broom, mop, hammer or wheelbarrow to manoeuvre.
Cal was a tall, strong and charming looking little boy. Smiling and laughing wasn’t just his response to entertainment it was his gift. With great big blue sparkling eyes, a hint of mischief and spirited twinkle, Cal had a vitality that was so endearing. His persona was beyond his years and more beautiful than his shell was his soul. Laughing, hugging, kissing, excitement, roughing it up, sharing, racing to the front door to greet our visitors, listening for Daddy’s truck, running up and down the verandah……….we saw our boy embrace life with awesome enthusiasm. With a joyful radiance Cal was at his happiest in the company of others. Greater than any material pleasure was his love of people especially his large family network. He relished the attention, loved a gathering and intensified a surge of emotions within you in the pleasure of his company.
Caleb was a unique and special child. His story deserves to be retold not because of the tragedy of his death but because of the powerful, meaningful, happy and heart-warming commitment Cal had to living. Subsequently the memories he has left with so many people are indelible and that is why Cal’s life is enduring. His impact on others was astounding.
Caleb’s energy was also very tender. He was affectionate, adoring and playful. Time was never wasted with an admirable determination to be part of everything. It is hard to believe that such a beautiful young child with a world of promise was robbed of the continuity of life. His passion for the blessing of every moment he lived is the reason we feel committed to establishing his foundation. Caleb epitomised the pinnacle of life and that is what drives us in our endeavors to protect and preserve the greatest and most precious of all gifts….our lives.
Caleb, alongside his siblings, is the essence of our hearts. He inspired us with his zest and the totality with which he lived and now empowers us to make a difference in the fight against meningococcal disease, to ensure the dreams and pursuits of every life, be it young or old is realised.
Truly an honour, a privilege, a blessing to love you Caleb
Thank you cherished son for you……. ours to treasure, adored forever.
The 17 hours that unfolded between Friday the 5th and Saturday the 6th of April in 2002 will no doubt be some of the most profound measurements of time in our lives. It is incomprehensible to understand the intimacy of our journey and the experience of meningococcal disease that claimed the life of our precious son Caleb. The script is too raw to be exposed in its entirety and the reality is that the characters are not fictional. We are an everyday loving family that have been utterly devastated by a disease reminiscent of something from the dark ages.
We had enjoyed a normal morning of activities with our son Cal. An unusually early afternoon sleep preceded the onset of symptoms that marked the beginning of the tragic events that were to unfold. Without warning our Son went from effervescent to debilitated within hours. As he was a healthy and energetic child his decline was most obvious and frighteningly rapid. Whilst we were unaware that our child was suffering from meningococcal disease we were very distressed by his presentation and had rung for medical assistance. We were advised to visit a surgery later that day.
Caleb’s condition continued with no improvement even after the administering of Panadol and Nurofen. His temperature was spiking at 41, he was motionless, twitching and the appearances of purple pinprick spots were on his arm, neck and torso.
After receiving a diagnosis of viral infection we returned home from the doctor’s surgery, confused but relieved, to care for our son. Many conversations with family and friends had taken place that afternoon, all pertaining to the welfare of Caleb and to withdraw our inclusion from a big weekend of activities to allow Cal to get better.
Later that evening our worry continued to intensify as Caleb was unable to support his weight and was deteriorating. He had vomited and was not engaging with any stimulation. We did not leave his side especially as he was mildly convulsing. Every 15 minutes we would turn him from his lying position of stomach to his back. It was at this point that we were horrified to see the expansion of his spots into a birthmark rash. A deep purple mark extending across his chest had appeared within minutes.
Caleb was rushed to Box Hill Hospital where he was placed in intensive care and treated with urgency. The rash continued to spread and whilst medical staff were communicating their intentions, reassurance of his wellbeing was not forthcoming.
We began to become aware that Caleb’s life was desperately fragile.
In the early hours of Saturday morning it was required Caleb be induced into a coma to stabilize him for transfer to the Royal Children’s Hospital and to alleviate his pain. Caleb looked at us with pure love before the affect of the coma took hold. It is an image that will last with us forever. It reflected the spirit of our son and promoted the love that forged the bonds between parents and their children. For those brief moments the connection between us overshadowed the environment we were in and the plight that was in front of us.
Upon transfer to The Royal Children’s Hospital the medical staff continued to exhaust every possible intervention for our son Caleb. So much unfolded in those hours. The praying, the pacing, the emotions….hope, shock, disbelief… And then the emergence of the doctors with the resigning removal of their theatre hats to deliver the tragic news. Caleb’s organs were failing and that nothing more could be done.
Traumatised beyond recognition we sang to our son, we kissed him, we held him, and we loved him into eternal life. With a single gentle tear that rolled down his beautiful face Caleb farewelled us. At 9.05am on Saturday the 6th of April our son became an angel.
His death from meningococcal strain B was so cruel, so utterly devastating that we will never recover from witnessing the pain our cherished son endured and the subsequent grief we will live with forever.
I had come to Melbourne on the 30th December to spend time with friends and celebrate the new year. It was new years eve, 1998 and I was not feeling very well. As the new year grew closer, I felt more and more sickly and had really bad cramps in my calves. I managed to stay out at the club we were at and see the new year in. I then drove some friends home and then went home myself with the cramps worsening. I had numerous bouts of sweats and feeling very sick.
The next day I started throwing up. I put it down to my boyfriends cooking and the cramps due to me overdoing it at the gym. We did not know what to do for someone who was throwing up continually and rang his mum who recommended I eat fruit. That stayed down for a while and so I was happy with that. However shortly after, the cramps continued and the vomiting persisted. I was not happy as a couple of friends and I had planned to go on a picnic. I never did make it to that picnic.
That night , I kept trying to walk to get the cramps to ease up. I noticed that I had a bruise on my leg when I went to take a cold bath. Later again I noticed I had more bruising. I was putting it down to me being clumsy. As it came into the early hours on the 2nd of January and I was still not feeling better, was actually feeling worse my friend informed me that if I could not sleep he was going to take me to the hospital and even if I could sleep he was going to get his brother to take me to the doctors the next day.
When, even after his threat I could not lay still, bearing what he considered to my high threshold of pain and my unusual complaining he insisted we go to the hospital. I was not happy and we persisted to argue about going to the hospital, thankfully he won. When I was in the car, I could not wait to get there.
Upon arrival I was hobbling towards the casualty, he tried to get me a wheel chair yet, I was “no, I CAN walk”. However a nurse saw this and came out and got me in the wheel chair and rushed me straight through to a doctor. It was amazing how quickly it was all happening.
My, what I thought to be bruises and what I now know to be a rash had spread. They informed me what they thought I had and I had no idea what they were talking about, meningococcal and to be honest, I did not care, I simply wanted them to give me what ever I needed to be better so that I could go and get on with my holiday. Even when I was in intensive care with my legs rotting all I wanted to do was get out and get on with my holiday.
Monash hospital staff told me they needed the number of my next of kin. I argued with them saying that I did not want to give it to them as I did not want them to worry my mother. I kept telling them not to worry, I will be fine. My friend persisted and got the details. My poor mum got the horrifying phone call that she had better get on the next plane. They rushed me through to intensive care and commenced my treatment. It was all fascinating.
They conducted a number of fasciotomy’s and not long after I was put into a ward. I ended up with a below knee amputation with a grafted stump which was very cool as it meant that I was able to keep my knee, without the surgeons taking a gamble and grafting it, I would have ended up with an above knee amputation, making prosthetics that little more difficult. I had 2 x grafts from one of my thighs and one side of my bottom, I had to have a before and after if I could.
Over the next 6 months I watched my toes on my remaining foot slowly drop off and all the scabs of my arms. The surgeons wanted to operate on my arms and foot but thankfully I listened to my instincts and only let them fiddle with my foot and my arms are great. I was fortunate enough to be put into contact with Grace Warren an incredibly big hearted and talented surgeon who operated on my foot. I still have problems with my foot but it is still there and allows me the choice of which leg is better, when I need to use crutches. I now live a “normal” existence, I don’t know if there is such a thing as really normal but the one I have is a happy one.
How I have got to where I am is with my determination, the constant belief that it will be right and most importantly my incredibly wonderful circle of friends and family’s continual support and love. Knowing that you have great people who are there when you need them is all I need to keep my spirits up. I have to do some things differently and sometimes have had to begrudgingly slow up a little. I however still try to water ski and ride my horse, go swimming. I still have a great life. Pain is always a part of my life and is at times frustrating. I have got to meet some amazing, wonderful people. I constantly get to meet people who remain so upbeat even in their adversity, they still remain such strong, fun and good spirited people.
My story is not only about meningococcal, it is about the journey that the disease has sent me on. The journey of being able to better empathise with people. About learning the HUGE difference a good and bad doctor can make, about the difference in peoples attitude and how this can affect your life. I once had a person come up to me in a shopping centre and go oh yuk how come you don’t cover them up, (in regards to the scars on my arms) what happened! As my very witty girlfriend said, you should say oh yuk, what happened to your head, why don’t you cover that up.
I do hope this story in some way may help someone, know what the warning signs of meningococcal are and very importantly I urge you to support the violet foundation and their efforts to better educate our community. To know what the warning signs are and react to these may save yours or your child or your friends life.
On the 27th October 1998 my life drastically changed! I had contracted Meningococcal Septicaemia. Still to this day, no one knows how or where I contracted this devastating disease. From this I was one of the lucky ones to have survived and only lost my legs below my knees, I also under went several skin graft operations during the 9 months that I spent in hospital. Throughout my time in hospital, 6 months was spent on rehab and schooling then went back to school at Santa Sabin College, full time to complete my Higher School Certificate. I furthered my studies and completed an Advanced Diploma in Graphic Design. I am currently working part time for Motographics who have helped me enormously by allowing me to take the time off needed for training camps and competitions.
Through the help from my loving family and friends I survived and through their support I was able to begin my new life as a double amputee.
Being a double amputee does not mean that your life has to come to an end, it just means that one door has closed and another door full of opportunities has just opened. I have been a skier since I was 3 years old and this was one activity that I was not going to let disappear, it is now my life. After learning how to walk on prosthesis and getting my life back on track I thought it was time to try skiing once again. I had my leg doctor make me a pair of skiing legs and then the day came to try them out. It took a little to get used to and figure out the different ways to achieve the same as any able bodied person but now I can say I ski better than some able bodied people.
The 1st week that I spent skiing in Australia was one of the best weeks of my life after my illness, I was then offered a week skiing on a disabled winter program which furthered my skiing and then was recognised by Disabled Winter Sport Australia (DWA) for their Talent ID Team. From this I was offered to attend a training camp in Kimberley, Canada designed for disabled winter athletes, which helped to further my skiing to Paralympic level. Following this camp I was accepted into The Development Squad for DWA Alpine Ski Team. I have now spent one Australian season training with the Disabled National Ski Team and also competed at the 2003 Australian Nationals for disabled at Mount Buller in Victoria and won the “Woman’s Giant Slalom” and “Super Giant Slalom”. Further more I have spent one American winter season at Winterpark, Colorado training and competing against disabled athletes from around the world. This has advanced me onto the Development National Team for Australia.
I am currently training once again in Australia for the season and will be competing in the disabled National again at Mount Buller in Victoria. Nothing is final as yet to where I will be training in the American season, but I will be competing in a number of competitions throughout America to get my points up so I can represent Australia and be the 1st female to compete in the Winter Paralympics.
My life now consists of months of ski training and competitions to be able to compete at the 2006 Winter Paralympics in Turin, Italy. I compete in LW3 for skiers with a disability that affects both legs, but not to the extent that they rely on outriggers.
Sarah Simpson was 22 when she died from meningococcal septicaemia sero group C.
She was full of life, fun loving, independent, wanting to spread laughter and cheer, a peacemaker, having a quick wit and forgiving nature. She wanted to fit so much into her life, into her relationships. She worked as a hairdresser and part time in a pub. She would skip meals to fit everything in. If she was ill she would dose herself up and keep going. Not living at home she did not always have someone to check that she was looking after herself.
Sarah was born in England in a small village in Lincolnshire, called Tetney Loch on June 29th 1977. Sarah has an older brother James and parents Mike and Brenda. As a child Sarah and James loved playing outdoors when weather permitted. She was lively and had an enthusiasm for living, perhaps even a little mischievous. She and James were very close. They had had a couple days in Australia with cousins and in 1994, Brenda and Mike emigrated, settling in Port Macquarie. James had arrived the year before. Sarah wanted to complete her hairdressing apprenticeship so stayed another year in England.
I think the scariest thing about my experience with Meningococcal was my knowledge (probably lack of) of the disease. I had seen current affairs bulletins about children and teenagers coming to terms with losing arms and legs, fingers and toes and possibly even sight. And even those that had lost their fight for life.
So what was I supposed to think when my doctor raised his suspicions and said he’d ring ahead to Katoomba Hospital for immediate treatment?
I remember the day before I was diagnosed….. I had been at my first full time job for a little under two and a half weeks. It was a Tuesday and my colleague / school friend was making jokes about not standing too close to me in the lift because I was feeling sick. When I got home that night I considered going for a run, but I had a splitting headache and my energy had all but disappeared.
I’m generally not one to complain about not feeling well, so when I actually woke my Mum up at 2:30am Wednesday morning to tell her I really wasn’t feeling well, her warning bells sounded. The local doctor said it was just a case of the flu. Mum was unbearable – continually asking if I had a rash (she knew what she was looking for) ….. After a nap late that afternoon I noticed a light rash appearing on my arms and legs, but it wasn’t till Mum noticed the black spot behind my knee that we knew something was seriously wrong. Mum went into a panic, where I was completely calm (I think I was too incoherent to take it all in). I had never felt worse. I hadn’t eaten all day, I was beginning to feel sick and I could barely move because my joints were so stiff and my muscles so sore.
It all happened so quickly. One minute I’m lying down on the lounge. The next, Mum is being told to take me straight up to Emergency. And then there was the hospital experience.
It was five years ago now (to the date, actually), so things are a bit fuzzy – kind of dream-like. I remember things like sending Mum home to get me some clothes, the lumbar puncture which made the headache a hundred times worse, lying in emergency listening to a guy scream about his broken leg. My head pounding so hard that I couldn’t keep my eyes open and I was shaking. I was freezing. But I was more worried about my “boyfriend” at the time, than myself. I wanted Mum to call him – not to let him know I was in hospital, but I didn’t want him to get sick as well…… Mum didn’t know this; she just thought I wanted to see him.
I remember Dad arriving and asking what I was doing by scaring him so much. The doctors sitting me up to go to the bathroom, because I refused a catheter and not being able to see anything except a bright light. It was like looking into one of those fluorescent overhead lights…… Apparently the attending doctor told my parents I was suffering “hysterical blindness” and I should be sent home.
And that’s it.
The next four days have been re-counted by Mum, Dad, Michael, doctors and a few other special people. I remember little things. Like doctors attempting to hold me down, putting those attractive white stockings on my legs to stop blood clots, and a couple of faces in the window of intensive care. From what I have been told, the doctors at both Katoomba and Concord battled to keep me under control, with five doctors in Katoomba holding me down and then seven in Concord. In the end, they tied me down. I ended up being attached to a respirator in the event that I forgot to breathe.
I remember waking up on the Friday and my Dad asking if I knew where I was. I was positive that I was in Katoomba hospital. I was wrong; I had missed my one and only ride in an ambulance to Concord Hospital early Thursday morning. After that brief conversation, it wasn’t till Saturday that I really started to regain consciousness.
Another question – “Do you know what day it is?” I knew. It was Thursday. Again, I was wrong. It was Saturday. I lay there with tubes attached to me everywhere and feeling like E.T. with a heart rate monitor attached to my index finger. Kate was an ever-present figure – reading various cards to me and showing me pictures that my cousins had drawn. I had a funny taste in my mouth (which “Light and tangy” chips cured). It wasn’t long before I wanted to sit up and start removing my tubes. I noticed the naso-gastric tube that I thought was an oxygen tube attached to my nose. When it was half way out and I finally realised it went all the way down to my stomach, it was too late.
I couldn’t wait for a shower, to wash my hair and brush me teeth. I wanted to go home.
Not realising how hard it was to stand and walk after four days of complete bed rest, I was so sure of myself when the nurse asked me if I was O.K. to stand on my own. I wasn’t – my knees felt like jelly.
And so began my quick and (very) impatient road to recovery.
I was moved from Intensive Care to High Dependency. I had my long awaited shower and was even allowed to wash my hair. Worst part was, I had to get Mum to brush my teeth for me. Finally I was presentable to my family and friends.
My first meal in five days was breakfast, but because I had missed the menu selection, I ended up with a left over boiled egg and orange juice – not the best thing to start your appetite on. That was my only complaint about hospital food – the rest, I’d give a four star rating!
Finally sitting up in bed and reading Cosmo and Cleo with Kate and even playing with a “Where’s Wally” book was when I had my first encounter with Dr James Gench. Young, tall, blonde wavy hair and a Country Road wardrobe – what girl in their right mind would refuse to be treated!? James and his team, along with the other nurses and doctors at Concord hospital were fantastic.
I was only in High Dependency for one night before I was moved to a normal ward. I would have preferred to stay in High Dependency because I was moved to a repatriation ward. It wasn’t the most pleasant of places to spend the next few days, but I guess that was part of my motivation – I couldn’t wait to get out of there. There were a couple of lovely women there – the one beside me smelt of lavender and the one opposite always had roses.
I eventually had my central line removed (which later proved to be a mistake) and various canulas inserted in its place. It felt as though half the skin on my neck was removed in the process, so it actually looked like I had a huge hickey! I also had a view that you would only expect in a five star hotel. I was overlooking the Parramatta River and right next to a window where I could climb out onto the balcony. My headaches were still there and I was receiving needles every day for things like prevention of blood clots. I still had my IV of penicillin, which had to be taken out and changed location sometimes three times a day because my veins kept collapsing, but I was itching to go home.
I had a constant stream of visitors, but I also noticed that there were quite a few people that kept their distance from me. Some thought I was contagious and retained to a “bubble room” where you were only allowed in to see me if you were wearing a gown, gloves and facemask. Some doctors gave out incorrect information, saying that I couldn’t be seen because they would be at risk of catching the disease. People just didn’t have enough knowledge of the disease itself. Others were simply ignorant.
I had enough flowers to fill a florist, teddybears to cuddle up to at night and LOTS of chocolate, including a packet of Tim Tams that was devoured at two in the morning.
I was lucky enough to be transferred back up to Katoomba late Wednesday afternoon. I had a room of my own and a waterbed! It felt a bit strange walking back into the hospital – I remember it being in slow motion – it was probably me in slow motion, but I just felt so dazed. The next 72 hours went really slowly. I was barely sleeping because I had my blood pressure taken every four hours along with a dose of penicillin. My veins weren’t coping with the canulas, which meant that I was having them removed and then put in a different spot. I just wanted to go home. I couldn’t stand having any more needles (or the late night and daytime television). Unfortunately on the Thursday night I welcomed a roommate suffering from pneumonia, so from then till the Saturday morning, I barely slept.
My visitors were coming far and few between apart from Mum, Dad and Michael and Kate. It seemed as though once I was out of immediate danger, there was no need for them to visit me. I met a few of the doctors and nurses who had tended to me before I was transferred to Concord – they were more than a little surprised to see me.
Finally Saturday rolled around. Ten days admittance to hospital for the treatment of Meningococcal Meningitis Type (B). Although I can only recall six of the ten days I was in hospital, it was long enough. In all honesty, I think my experience with Meningococcal was harder on the people around me, than it was on me.
I have chosen to remember my experience as though I was lucky enough to beat the odds. I drove the attending nurses mad by asking when I could go home! It felt strange leaving the hospital – being out in such a huge open space. I actually felt car sick on my way home, and when we finally got there, everything looked different. Smaller. My room was full of flowers – you literally couldn’t walk in there.
It was recommended that I take another week off work to recouperate and regain my energy levels…… I was so bored. Mum drove me mad because she waited on me hand and foot. Towards the end of the week, I was “released” to go shopping with Kate and to a soccer game with Chris, although Mum and Dad barely wanted to let me out of their sight.
I experienced some very serious complications with Meningococcal – many of which were even new to the doctors. The most common symptoms include loss of appetite, nausea, intense headaches, aching limbs and a red rash. I encountered things like temporary loss of sight. Swelling of both the outer and inner membranes of my brain and bleeding of the brain, in which case, if the bleeding didn’t stop, a procedure would be performed where a hole would be drilled into the side of my head to stop the bleeding. That would involve shaving my head – when Mum told me this later, I told her that one bad haircut in a lifetime was enough, so there was no way anyone would be shaving my head!
Lucky for me, I was not aware of the more serious complications at the time. The doctors were learning as they treated me, so the questions that were asked by my parents often went unanswered. They were treating the unknown.
I look back on my experience and have not once questioned why it happened to me. Unlike many people who have contracted Meningococcal, I managed to walk away from ten days in hospital with no long-term side effects. Mum believes that I have my grandparents as my guardian angels, and after this experience I am inclined to agree with her.
My name is Greg Peters. I am 43 years of age. On the 23 October 1999 I was admitted to Liverpool Hospital suffering from Meningococcal Septicaemia. I was given very little chance of survival. Although I lost my pericardium, the sac around my heart, I have been told by doctors and medical personnel it is a miracle that I survived the disease.
At the time of contracting the illness I was 41 and a fit and healthy person for my age. I had not seen a Doctor, due to illness, for over 5 years.
I hope my story encourages others to take note and be aware of what can happen to them. Meningococcal is not an illness just for young children.
Prior to 23 October 1999, I, like many other people, had only heard of Meningococcal through various media outlets such as T.V., radio and newspapers. This would only be when the media were reporting on the death of a person from the disease or were doing a story on a person who had been devastated by the meningococcal. I use to think how tragic it was, but didn’t think any more about it until the next article appeared.
How different I now view the newspaper or media articles on Meningococcal. I now say how lucky I am that:
(a) I am still alive, and;(b) I only have a scar down the middle of my chest to say I was sick.
On Monday 18 October, I started to get a sore throat and a bit of a headache. I thought I may have been coming down with a bug, but didn’t think too much about it. I was also going through a promotional appeal at the time and thought it may have been a bit of stress.
By Tuesday I started to feel better. The headache was gone and my throat was not as sore as it had been, although I didn’t feel 100%, I just wasn’t running on all four cylinders.
By Friday evening I had become very tired and went to bed early. During the night I was very restless, I was coughing and got out of bed on 2 or 3 occasions, which was highly unusual for me.
Saturday morning I woke up with what I thought was a good dose of the flu. I had aches and pains in my joints, I had a headache, stuffed up head, hot sweats and cold shivers. I even had a grating pain in the chest, which I tried to compare with a previous attack of pleurisy.
I remained in bed taking some Panadol, knowing full well that in a couple of hours I would have sweated it out and I would be fine. How wrong I was.
By evening my wife decided I should have something to eat as I hadn’t eaten all day. When it was ready I walked down stairs and by the time I reached the kitchen I was out of breath and finding it difficult to breathe.
My wife suggested that as I wasn’t any better I should go to the doctors. I was still having difficulties breathing and I agreed. At this point I was unable to return to the bedroom to change, as I knew I would not have been able to make it back up the stairs.
We travelled to a medical centre at Bankstown, some 20 minutes away from home. My wife let me out at the front steps of the medical centre, and even though there were only four steps, this was an effort.
After an uncomfortable 40 minute wait I was called in. By this stage I could hardly walk by myself and I was steadied by my wife. Of course, the doctor’s room was the furthest away from the waiting room.
I eventually made it to the doctor’s room and his first question was do I have pains in the chest. I said yes only for the fact I thought it may have been pleurisy. He took me into an examination room and put me on a bed. He did the usual blood pressure and pulse test and he left the room. He returned a short time later and indicated he had called an ambulance. My wife and I looked at each other and thought it was an over reaction to a dose of the flu. We later learnt he thought I was having a heart attack.
The ambulance arrived a short time later. A Paramedic Inspector came along for the call, thinking it unusual for a doctor to call an ambulance to the surgery.
After an initial assessment I was placed in the rear of the ambulance expecting to go to hospital immediately. About 15 minutes later the ambulance hadn’t moved from the doctor’s surgery with the Paramedic Inspector steadily working on me. He could not find any blood pressure or pulse rate. My body was starting to close down. He immediately applied fluids intravenously.
I only recently found out that had he fed adrenalin into me, due to the supposed heart attack, he would have killed me. My heart was in such a stressed state that it would not have been able to cope with the adrenalin. Something told him, be it intuition or instinct, that adrenalin wasn’t the right treatment. He was chastised by fellow paramedics and medical personnel at Bankstown Hospital for not doing it. I am certainly grateful that he didn’t.
At Bankstown Hospital I underwent an E.C.G. Apparently it showed my heart had problems, although I wasn’t showing the true heart attack symptoms. My wife was informed I had had a heart attack but this diagnosis was later retracted.
They were treating me with all sorts of drugs, including antibiotics and constantly running tests. They knew I was critically ill but had no idea why. My wife was allowed in by the nursing staff, but asked to leave by the doctors.
Some hours after, when my wife was allowed back in to see me, she saw some unusual spots on my stomach and upper body. She asked the doctor what could they be. His reply was “Weren’t they there before?” With the reply of no, the doctor pulled down the sheet and saw my body was covered in a purple rash. Staff suddenly came from everywhere, they knew what I had.
The doctor immediately inserted a central line into my neck for high doses of antibiotics. The medical staff were now very concerned about my health and inquiries were being made at various hospitals to see if there was a bed in I.C.U.
An Intensive Care Unit bed was found at Liverpool Hospital and I was to be transferred by Careflight Helicopter. Unfortunately the weather was too foul to fly so I had to be transported by road.
The Helicopter Medical Team arrived and they became responsible for my care. I had to be transported on their special stretcher that contained all the monitoring equipment.
The doctor from the Medical Team explained to my wife that it was important that she followed them to Liverpool Hospital due to my serious condition. They weren’t sure whether I would survive.
Now I understand why when my wife kissed me goodbye she said, “Don’t leave me”. Although I replied “Don’t be silly, I’m not going to leave you”.
The trip to Liverpool Hospital seemed to take forever. I was immediately placed in the isolation room of Intensive Care. I was struggling to breathe. Numerous doctors and nurses came and started to work on me.
For the next few days night and day became much of a blur. Friends rallied around my family and I had a 24 hour a day vigil. The doctors could give my wife little hope. They were not confident I would survive, let alone what permanent damage I would have. They did not know what damage had already been caused.
It took a couple of days before the meningococcal was confirmed. The medical team thought it was more likely I had a virus attacking my heart, as my symptoms were not A typical of meningococcal. They had not seen my heart problem in a meningococcal patient before.
How I felt at this point is a blur. I don’t recall being in any pain, although I do know I was struggling to breath. My internal organs had started to close down and the medical staff were concerned about my oxygen intake.
By Tuesday I was moved from the isolation room, although I remained in Intensive Care and the results of tests confirmed it was meningococcal septicaemia.
I surprised the sister caring for me on the Tuesday morning when at 4.30am I asked if I could have a shower. I don’t think they receive too many requests like that in I.C.U. She complied and with tubes, bags, bottles, oxygen mask and wheelchair, off I went to have a shower. It felt wonderful, even if it was only sitting down. I repeated this on the Wednesday morning at the same time.
By lunch time on the Wednesday my improved condition had started to deteriorate. X-rays showed I had a large amount of fluid around my heart. That afternoon the cardiologist syringed 840 mls of fluid from around my heart. He was very surprised at the amount removed, although it was later discovered there was still a gelatinous substance within the sac.
The removal of the fluid eased my breathing although the medical staff were still concerned. The sister caring for me on the Friday showed particular concern. That afternoon 290 mls of fluid was removed from my lungs, which eased my struggle to breath. My condition improved sufficiently and I was transferred to the general ward.
By this stage I had lost 10kgs in weight. When I first saw myself in the mirror I couldn’t believe my appearance. I was unable to stand for long periods without becoming breathless. Walking to the bathroom was such an effort, let alone shaving or showering. These had to be achieved sitting down.
The following Monday the Physician was still gravely concerned about the continual build up of fluid in my lungs. A drain was inserted in my right lung and over a 24 hour period over a litre of fluid was drained. My breathing became easier although I was still short of breath. I found it very difficult to talk.
Although the fluid had been removed from my heart in Intensive Care, it appeared the gelatinous substance surrounding my heart was still holding the infection. On Wednesday I met Dr Bruce FRENCH, a cardio thoracic surgeon. He explained that without the removal of the substance from the sac, I wasn’t going to get better. He felt that surgery was my only option.
Not all the doctors in the team looking after me agreed. The physician was sitting on the fence unsure, the infectious disease doctors saying yes, and the cardiologist saying it was the last option. Of course I agreed with him I didn’t want my chest cracked open.
They decided to wait a few more days and freely admitted they were not sure of the correct treatment, as they had not dealt with my set of problems before. At this stage they were still amazed at my survival.
By the weekend nothing had improved. My heartbeat was still 135 beats a minute and my temperature was still spiking about 40 degrees. I realised by then that I was going to need the surgery.
Over the next few days I underwent extensive tests and on Thursday 11 November I underwent heart surgery where the sac was removed from around my heart. They were unable to remove the gelatinous substance without removing the sac. The surgeon told my wife they thought I would survive although they were shocked at the extensive damage the meningococcal bacteria had caused within my chest and the large amount of gelatinous substance within my pericardium.
As my condition improved I was transferred from the Intensive Care Unit to the Cardio Thoracic ward. My chest tubes were eventually removed and I slowly improved. By the Wednesday I was walking freely around the ward trying to find escape paths.
By this stage I had lost another 5 kgs in weight and I was still receiving high doses of antibiotics through the central line in my neck.
The doctors were unsure how long the antibiotics should continue and I was transferred back to the general ward for further treatment.
I remained in hospital for another week before being sent home with a Baxter bottle, which contained antibiotics and fed into the central line. A community nurse came daily and changed the bottle.
When at home I started to walk short distances. I felt better each day and I would increase my distance. However I was in trouble from my wife, neighbours and doctor when by the fifth day I walked 3 kilometres even with my drip.
After two weeks at home the drip was eventually removed. I took the advice of my doctor and I did not return to work for another 3 months.
I was in Liverpool Hospital for five weeks and away from work for a total of four months.
I know how lucky I am to have survived and be able to relate my experiences. Medical personnel have told me that I am the first person who has survived where the meningococcal has attacked the heart. The others have died from heart attacks or other organ failures. I have not lost any limbs or digits, or suffered any other internal damage. I only have a scar down the middle of my chest to remind me of what I went through.
Around midnight Saturday 29th October 1994…
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 Panadol but she couldn’t keep that down. I put a cool face washer on her forehead, took her blankets off and kept an eye on her during the rest of the night. She had been sick with a throat infection two weeks earlier and I thought it was that again. I was wrong.
In the morning she slept until about 8 o’clock which was late for her so I went in to check. She was even hotter. 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 had a horrible feeling this was more than just a throat infection. I put her and my then 3 year old son Dale in the car and drove up to the Doctors.
The Doctor took her blood pressure and it was not good. An ambulance was called, but Nowra, where the nearest hospital was, was 35 minutes away. As she was being put in the ambulance the Doctor gave her an injection of penicillin which was one of the reasons she made it to the hospital.
I was holding her in the ambulance on the way there and I noticed that we were driving very slowly along bumpy, dirt roads which is not needed to get into town. I had no idea where we were and I was sure we should have been there by now. I couldn’t work out why we weren’t travelling the most direct route. That soon became very clear to me.
We stopped on the side of the road half way there. I had no idea what was going on. Then the back door opened and a paramedic jumped in. She was so sick we had to meet the paramedics on the way. My baby probably wouldn’t have lived if we had gone straight to the hospital. I have no idea where he came from, it was just like he appeared out of nowhere. We kept driving and left the car that he came in on the side of the road. There were now two ambulance/paramedics working on Danielle to try and get her to the hospital alive.
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. I’ve since read her admission notes and apparently she improved enough for me to hold her, though unfortunately I don’t remember. Then, shortly after, she started to decline rapidly. All of her veins began to shut down.
The Doctors told me she would have to be transported by helicopter to Camperdown Children’s Hospital in Sydney. I didn’t know why they couldn’t help her at Nowra, no-one had told me what was wrong with her, maybe they didn’t know. But I was glad she was going to Sydney because I knew she would be in the best hands.
I had to organise someone to look after Dale and I also had to go back home to pack some clothes. I couldn’t go in the helicopter with her because there wasn’t enough room (and maybe they just didn’t want me there) which is fair enough looking back now but it didn’t seem it at the time. The usual helicopter was being used for another rescue so Danielle was air lifted in a smaller one.
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. It was now Saturday afternoon.
The drive to Sydney took forever, well it seemed like it did. When I got to Camperdown I went to emergency, they told me she was in the intensive care unit. It was like a maze in that hospital, trying to find your way around at night and being in a panic.
I found the ICU and walked in. My baby was lying on a bed on the other side of the room and her arms and legs were black. 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 think Danielle’s got meningococcal and that she probably wasn’t going to live. I hadn’t heard of meningococcal, 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 for ever.
There were so many operations and tests and Doctors that saw her in the seven weeks that Danielle was in the intensive care unit and then another few weeks in the infectious disease ward, as she had contracted golden staf. Being 1994 there hadn’t been nearly as many cases of meningococcal as there are now. So she was sort of like a guinea pig in a way. A week or two after she was admitted I was told that if she did survive she would probably lose every limb. Her arms and legs were so badly affected. There was talk of her being taken to a hospital with a decompression chamber and putting her in there to try and get the oxygen and blood flow back into her limbs. But that idea was soon aborted, the Doctors didn’t think she’d make the trip even though it was only down the road. She had a cream spread over her arms and legs to try and do the same thing, then wrapped in glad wrap. I’m not sure if it helped. Maybe it did. Doctors from Melbourne and America were giving their opinions on what should be done to help her.
Eleven days after being admitted she had her left arm amputated through her elbow. That was the first of nearly forty 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. She was on adult doses of sedatives and pain medication. Her Doctors weren’t really sure why she needed so many drugs, whether it was because she was in so much pain or that her drug tolerance was so high. She was still awake half the time though. When I’d walk in the door she would be straining to sit up to me. Her face would go red and she’d try and lift her arms up to me. And she’d try and talk even while ventilated. That was very sad. I wanted to help her so much but couldn’t. I got to hold her on day 20. I held her for a long time but was so worried that I’d hurt her in some way. She was in plaster and bandages from her neck to her toes.
I took Dale in to see her after five weeks. He kept asking where she was so I thought I’d let him see where she was and it may help him him understand why I couldn’t be with him. She was so happy to see him. She was all smiles, putting her arms up to cuddle him and saying ‘brother’ and giving him kisses.
Danielle was never actually diagnosed with meningococcal septicaemia. The way it was explained to me was that, when she was given the injection of penicillin, getting into the ambulance at the Doctors surgery, that killed off the initial bug. But the toxins had already got so far into her system to make her so sick. So when blood was taken to diagnose nothing showed up. But it was always thought to be meningococcal septicaemia, probably B strain. She would have had a lumbar puncture but the Doctors didn’t think she’d be able to cope with that either. Everyone that had been in contact with her in the last week had to have the antibiotics, in case we were a carrier or had caught it off her.
Her long stay in intensive care soon came to an end. There were very good times and there were very bad times. The best time of course was when she left the ICU, but it was also sad in a way because these people had helped keep my baby alive and done the best they could for her. If it wasn’t for them she wouldn’t be here today. I knew she’d be able to come home soon and her and her big brother would be able to play together again.
Two and a half months after being admitted to Camperdown Children’s Hospital, Danielle was able to go home. Although she was back a week later and then again in another couple of weeks.
After eight years she’s had a lot of surgery. She had a marathon 14 hour operation to take her big toe (one that survived) off her foot and transferred onto her hand in 1999. She can now hold things with a bit more ease. She’s now in the process of having surgery on the bones in her legs to lengthen and straighten them. All the bones in her legs have stopped growing because the growth plates have closed from the damage of meningococcal, so she’ll never be very tall. When that all comes to an end she’ll probably have plastic surgery on her arms and legs. By that stage she’ll be old enough to make those decisions herself.
The way I see it is that she’ll always be my beautiful girl and she’s with us and that’s all that matters.
Updated October 2007
It seems hard to believe that it has been 13 years nearly to the day that Danielle contracted meningococcal septicaemia. So much has happened in those years. She has grown from my little baby girl into a young adult who has dreams and visions of her life ahead. She is a horse mad, animal lover, amazing swimmer, caring for the environment, fun loving, strong willed, independent, knows what she wants (and is not afraid to say it), loving daughter, stepdaughter and sister.
She’s had three leg lengthening procedures in the space of three years where her doctors cut the bones in her legs, put rods and wires through then built a frame on the outside. The whole process from start to finish takes up to eight months. In that time she has lots of physiotherapy, and hydrotherapy and extra trips to the hospital. At one stage we were travelling to the hospital 4-5 days a week. It was hard going but we always get there in the end.
We have just recently found out that the joints in her finger (her toe that was transferred to her hand in 1999) are collapsing. We do envisage more surgery in the years to come but as always I’m sure she’ll keep her chin up.
She still loves her horse riding and rides every weekend. She would ride every day if she could.
Just this past week she competed in her first swimming race at Homebush and she broke an Australia record! She’s only just started training three days a week and she was just looking forward to swimming at her first meet, never expecting to set a new Australia record!
I’ve got to say as her mum I’m not all that surprised that she broke a record so soon. I can see more records will be broken in the future if that’s what she wants to do, she will do it.