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My son’s fight against meningococcal … and how you can recognise the signs

meningococcal survivor LucasDinner on Sunday night was like any other. Little did we know that in less than 24 hours our son would be fighting for his life in Intensive Care.

After dinner Lucas had thrown up and thinking it was the food we had put him to bed and hoped for a good nights’ sleep. Throughout the night he woke up many times crying, I took his temperature and it read 39.1 degrees, after giving him pain relief I put him back to bed.

In the minute or so it took me to walk up the hall to our room he was crying again and had thrown up in his bed. We were up and down all night and by 5.30am my husband was leaving for work so I brought Lucas into bed with me.

By 7am he was so cold – his clothes were soaked and his temperature had dropped to 35.1degrees. I rugged him up and went to make him some breakfast. He scoffed it down with a whole bottle of water then fell back to sleep. He finally woke at 8.30 and as I changed his clothes I noticed a few small spots on the back of his neck. I automatically thought of meningococcal – but dismissed it straight away, thinking “that won’t happen to us”. I made a doctor’s appointment just to be safe and went about my morning.

After leaving the GP, I rang my husband and told him that the doctor didn’t seem too concerned but had sent me to the Paediatric Assessment Unit to get Lucas checked out. I had to carry him everywhere, because he could barely stand on his own without crying, let alone walk. As soon as the nurse saw the rash, she alerted staff and all of a sudden there were 10 people in the room – all trying to look at him and put needles into my beautiful little boy. By this stage those few dots had grown and spread over most of his little body. It was now 11.30am and I had told hubby to come down from work – still not knowing what was going on, but assuming our worst fears had come true.

When my husband arrived the head doctor explained that they thought Lucas had meningococcal and needed to be transferred to John Hunter Hospital for treatment. He had to be air lifted, as he might not have made the drive in the ambulance.

The doctor also informed us that he might need to be intubated for the flight as he might not be able to breathe on his own for much longer, but they would leave that up to the transfer doctors – they decided against it as they didn’t want to risk him not coming out of it. I went with Lucas in the Westpac helicopter while my husband drove, as only one of us could go with him.

We landed at John Hunter at 3pm, we were taken straight to ICU and Lucas was put into isolation, a bank of drips running into his little body – trying to keep him alive.

The head of the paediatric ICU took us aside for “the talk”. You know on TV, the talk that they give the family when they aren’t sure if the person will make it or not – just to prepare them for the worst – not that you can ever be prepared for something like that!

He told us that Lucas had suspected Meningococcal Septicaemia, C strain and has a 50 per cent chance of survival – every hour that he was alive, was an hour closer to him surviving. He couldn’t tell us where Lucas got it or if he would survive or have any after effects from the disease. Only time would tell.

It was heartbreaking to see our beautiful little boy lying there and not being able to help him. The whole thing had happened so quickly, to think only yesterday he was a happy healthy little boy and now he was lying in ICU fighting for his life.

Overnight, my husband stayed awake and held his hand – I managed to get a few hours sleep (I was now 33 weeks pregnant and needed the rest). By morning we were out of isolation, but still in ICU. Slowly the number of drips decreased from 5-6 down to 1, only fluids with oral antibiotics and on Wednesday afternoon we were transferred to the children’s ward.

After two long weeks, we were able to take Lucas home. Leaving the hospital with Lucas alive – knowing that we were still going to have him in our lives – was the best feeling. He is the strongest little boy I know and I am so proud to call myself his mum. He amazes us every day and we know how lucky we are to have come so close to losing him and still have him here with us.

During our stay at John Hunter many doctors came in asking if they could bring their students through to see him and ask us questions – meningococcal is not very common and many doctors go their whole career with maybe seeing one case! We were more than happy to oblige, if we could help one doctor notice the signs and recognise the rash early enough – another family wouldn’t not have to go through what we were.

That is also the reason I am sharing our story, it is so hard to write and even harder to talk about in person. But people need to be aware of the signs, this disease takes over so quickly. It was heartbreaking to watch our beautiful little boy in so much pain, so close to death –  but he never lost his spark, it was always there shining just as brightly as the day he came into this world.

I would never ever wish this on anyone and with children it’s always better to be safe than sorry. Always trust your instincts, I had “that feeling”. I knew something wasn’t right.

If you are concerned about meningococcal, you can do the “glass test”: press a glass onto the rash and if the rash doesn’t disappear you should go to the hospital. Google is your best and worst friend. If in doubt always contact your local health care provider or go to the nearest hospital – receiving treatment early, may save your life.

A few things I have always done when he’s been sick, I keep all the notes and photos in my phone:

  • write down what their temperature is and when you took it
  • if, what and when you gave medication
  • any symptoms they are showing (temp, vomiting, sweating etc.)
  • if a rash appears take photos on your phone (good to show doctors progress of the rash, I have the photo I sent hubby as well as along the way showing how it progressed)

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5 comments so far -

  1. I’m so pleased that you were able to take Lucas home and he is fine. You poor things going through that. Thank you for writing this, it can’t have been an easy thing for you. I had (viral) meningitis at the age of 3 which is nowhere near as dangerous but still kept me in hospital for a fortnight. My mum, who was a nurse, realised I was seriously unwell as I kept turning my head away from the light. I had no other symptoms other than being a bit under the weather.

  2. I’m so glad your son survived, thank you for sharing your story, my son had pneumococcal septicemia at the age of 5 months and survived, if it wasn’t for the quick intervention of the medical staff he may have died and for that I am eternally grateful. Wishing you and your family a safe, well and happy life 🙂

    • Thank you so much for reading Val! I’m so happy to hear your son survived! It’s amazing how quickly these diseases take over x

  3. Thanks for sharing your story Melissa! I can imagine the whole ordeal is something you’d rather just forget so I admire your courage in opening up to raise awareness of this terrible and swift disease. All the best to you and your young family!

    • Thank you for reading Rebecca! My only hope is that by sharing our story, that another family can be aware & hopefully as lucky as us! x

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