Meningitis– by Amanda Williams

The word every mother dreads and hopes that their child will never get. The mere mention of that word sends shivers down their spines. Well the unthinkable happened and my little girl Jessica got it and oh my god was it scary. We have a happy ending which for us is amazing. So many are not so lucky. I just wanted to tell people about my experience then hopefully it may help, if you ever have to deal with it, and I certainly hope that you don’t. (Ok this is going to be harder
than I thought, I am in tears already!)
It all started on the 1st April, put the girls to bed they went down fine. They had all had colds and the sniffles and the first time all week they had not needed any Medicine. Jess had a restless night, she started at 9 o’clock saying she had a sore bum! But was quite distraught about it. So I changed her nappy put bum cream on, nothing untoward to be seen. Not really that red for the amount of noise but off she went back to bed. An hour later again the same thing, calmed her down then she said her head hurt. Bit of a lump but the twins had had a push and shove contest in the day so presumed it was a bump she had got from that. Gave her Calpol to help. She settled again then an hour later she started to throw up. By this time her temperature was about 100 too.
I thought it was one of those 24 hour bugs that have been going around and treated it as such. Did the best I could to comfort her, stripped her off to a t-shirt (adamant that she was to have something on!) held hair out of the way, stroked her back and hoped all night.Something did not sit right about the night and how Jess was, so I phoned the doctor and got her an appointment – 3 o’clock was the earliest! Not good but that would have to do. It was my eldest daughter Molly’s 6th birthday the next day and I had so much to organise, how would I get it all done with a sick child. When I went to get Jess dressed she had a rash over her body, it looked like a heat rash very pale red, not a menacing looking rash. I put it down to her having a temperature all night and it was her body’s way of dealing with it. Dosed her up with Calpol and Nurofen to help her. Did try to phone back the doctors, but was a queue and I was put on hold so hung up. Jess was very pale with not much energy and was feeling very sorry for herself. Put it down to the fact that she had been up most of the night, still thought just dealing with 24 hour sickness bug. I even did the glass test at lunch time as spots seemed to have changed slightly but they disappeared. Something not right but nothing we hadn’t experienced before!! So I thought..
Got to the doctors Jess showing Molly her spots, “look at my belly Molly.” In the middle of the waiting room – luckily was quiet. She had perked up a bit and seemed as alright as she could be. The rash had slightly changed and some of the spots had scabbed slightly. It was a videoed surgery to develop the doctors consultation technique. Went through the night events etc and showed her the rash. She wanted another doctor to take a look for a second opinion. Some of the spots were blanching and others were not (some were disappearing and some of them were not!) Like she had two rashes. The doctors were concerned about the spots but thought Jess was quite well in herself, but they wanted her to be checked out by the hospital. Ok don’t panic going to be fine. As I try to calmly walk out of the surgery keeping my 3 girls in order. “Just got to take a little trip to the hospital girls, it is going to be fine. Jess just needs to be checked over!” My heart sinking, trying not to panic and hold myself together. Tried to phone everybody I knew to take the other 2, nobody was picking up their phones! Finally got hold of a friend (Julie) just as we got to the hospital and she was going to meet me there. Thank god she did and she is the most amazing friend. She arrived at my side as we reached Beach Ward.
We got to Beach Ward about 4 o’clock on the 2nd April. Met by Pam the nurse on duty, Jess was checked straight away. Then within 5 minutes we were seen by a doctor, “He turned to me and said we would like to take some bloods to identify what could potentially be wrong with her. After pressing the rash to see what happened, telling the other 2 to behave for Julie we will be back in a minute. Still no alarm bells as to what was about to happen, but obviously very concerned about what was wrong with her. We got into the treatment room followed by about 5 different people, nurses and doctors. To put it bluntly all hell broke loose. Canula’s went in, bloods came out, fluid went in then antibiotics went in all in the space of 20 minutes. Jess is screaming wondering what on earth they are doing. I am trying to hold her as close as I can and not fall apart trying to reassure her, she was just screaming, “make them stop, get me out of here I want
to go home.” We were then surrounded by about 20 people all busying themselves from all different levels and departments in the hospital. Lots of questions being asked and still the fluids were going in. They cut Jess’s top off to get a closer look at her rash, to Jess’s disgust. So a new top was promised, to have Sportacus on from Lazy Town, “she was Sportacus and she ate sports candy, but don’t cut my top off.” A doctor said to me, “we are going to be over precautious not under, not that we ever would. We are in talks with Guys hospital and liaising with them. Believing Jess to have Meningococcal”.
Meningococcal groups B and C are 2 types of bacteria that cause a high number of cases of Meningitis in the UK. Group B is the most common and group C causes more deaths. Meningitis C is the one that is now vaccinated against. As to which one Jess had we would not know until we got the blood culture results back in 48 hours. Stupid me because they still did not say Meningitis and I did not twig, knew was not good but was just concentrating on Jess and making sure the doctors had the information they needed to help her. Doctor Alex Adams took pictures of Jess’s rash to help with further training and awareness of Meningitis. They had not quite seen anything like it before. Jess had started to deteriorate, her face was now covered in the rash and her face was swelling slightly. Then they said they were transferring us to Guys hospital in London and the team was on its way to collect us. They had re-routed the ambulance on its way to Margate to collect a baby, for Jess. Panic set in and I fell apart, Nicky one of the nurses gave me the biggest hug and said, “ Who would you like us to call? The other 2 are fine they have had their tea and are in the play room. Would you like me to send your friend in?” To which I heard another nurse say, “make sure you prepare her for what she is about to see!” Jess was being
transferred to theatre recovery so that they could get her ready for her journey. She was also going there so they could monitor her better and be ready to anaesthetize her. At this point half Jess’s spots had visibly disappeared with the antibiotics going in. The spots that were blanching had gone, leaving the more harmful ones!
Once up on theatre recovery I had to speak to the environmental health people (think that was who it was!) and traced Jess’s tracks for the week and who she had contact with. Everybody that had been with her for a period of over twelve hours solid, in the last week also had to have antibiotics. For their own safety. All this was dealt with extremely well and the school/preschool would be notified. Jess was getting very agitated and desperately wanted the fruit shoot she
knew I had in my bag but was not allowed. We tried everything imaginable to take her mind of it – even down to talking about the colour of peoples badges. At about 6.30/7ish the Guy’s team arrived which was certainly a relief. Jess was promptly put to sleep so they could prepare her for the journey and insert much needed lines to monitor her condition and keep her stable.
Everybody that worked on her was absolutely amazing in my eyes. They all worked together to save her life, and a good job they made of it too. The support they gave was over and above too in every aspect.While Jess was being prepared, my other two girls were still in the hospital awaiting their antibiotics. I went down to see them and tell them for myself the situation and break the news to Molly that I would not be there for her birthday. All the birthday presents were wrapped and hidden in the cupboard. Emotions were running very high. All the staff were very supportive and helped in every way. Doctor Alex Adams came down to give us an update and it was time to go back to Jess and say emotional goodbyes to Molly and Jasmine. Jess needed me and they would be totally looked after and Molly spoilt on her birthday. Nanny (my mum) had arrived to give much needed help.
I will never forget the sight when I returned to Jess. She looked so tiny with lines coming from every part of her, attached to machines, it was a terrifying sight, but at no point did I ever think that she was not going to be alright because she was going to be. She had fluid, morphine and antibiotics going in from lines in her hand, foot and groin. She had also been given a muscle relaxant as well. There was a monitor on her heart, her blood pressure, her carbon dioxide/oxygen levels. She was intubated with a tube down her throat and another tube through her nose.
She was also catheterized. A truly heart breaking sight. We were then transferred to the ambulance about 8 o’clock to be taken to the Evalina Children’s Hospital, which was pretty much opposite the Houses of Parliament on the St.Thomas‘s Hospital site. I had a chance to speak to the doctor and the nurse travelling with Jess, I can’t remember much of the conversation, apart from “she is a very lucky little girl, you may not think she is right now but believe me she is.” It was not long before I knew quite how lucky. I was sat in the ambulance in a world of my own thoughts staring into space, but not taking my eyes off Jess just lying there with all the tubes etc.
Checking her monitors, for what I wasn’t quite sure. I could hear sirens and see reflection of the blue lights and cars moving over, there must be another ambulance/ emergency .. then I realised, no it was us and it was for my Jess. At which point she decided to try to wake up, not a wise idea, they promptly dealt with her and all was calm again. We arrived by the back entrance at about 10 o’clock and taken straight to P.I.C.U (paediatric intensive care unit). Jess’s stats had started to deteriorate understandably from the journey. They worked on her quickly to settle her and make her comfortable as possible and her stats improved. They would keep her intubated until the morning and continued with all the feeds going in. Her temperature had risen and she was given paracetamol and had a fan to help. She was put on a cot bed which looked weird and she looked huge in it. She had not been in a cot for quite some time, my poor baby. She looked so helpless.
The team were very friendly and I got a cuppa which tasted amazing. The unit itself was quite something, each bed had a nurse for one to one care 24 hours a day. Each bed had all the equipment there ready for what ever you needed pretty much. Nothing was too much trouble and I was allowed to use the phone to call out the news. (my mobile had died and no charger. Not going to leave home without it from now on!) There was plenty of space so no one was intruding
on anybody else but you gave the knowing nods of support to other parents around. Heart breaking sights, 2 week old babies and the sounds of their cries were quite something. None of which were taken in at this point.
Jess tried quite hard to wake up and pull the tubes out at every opportunity even though still asleep. She had to have cuffs on to stop her bending her arms and reaching them. She had no idea what was going on but knew something was obviously not quite normal. The nurse – Emma was keeping a close eye all night. Her stats looked good and she was holding her own. In the morning they were reducing the amount of help she had with her breathing and the she was
responding well. Slowly reducing the oxygen going in. She was trying to wake and it seemed to take hours, she would open her eyes then all too much, and sleep again. They turned the morphine off to help bring her round, she was doing ok.
Having not bought anything with me, and being all unprepared I headed off to see what I could get Jess. Ended up buying out WHSmiths – teddies, magazines, colouring. All food imaginable, what would she like to eat when she comes round? So I bought everything possible and in a variety of flavours! About 10am they removed the intubation tube. Jess was horrified she could
not talk she just squeaked and promptly fell back to sleep. Which I was quite glad of because they told me that it would be 3 hours before she could drink! Help how can I tell her that, she is only 3!!!! The rash was still very prominent but looking much better than before.
At the doctors ward round they were pleased with her progress. Had she been at Worthing they would have transferred her off P.I.C.U. and onto a ward. As the intention was for us to be transferred back to Worthing they were not going to put her through the journey just yet. She was out of the danger zone, I wanted to shout it from the roof tops, she was going to be ok. I then realised what they had said in the ambulance was true. She was a very lucky little girl. Just after lunch time I got my first cuddle in what seemed like forever. I had held her hand all night but not quite the same. She was changed into a bed and I got to cuddle her, which was not easy with all the wires but it was the best. She had done amazingly well and had responded to the antibiotics well and better than they had hoped. We got them in her early enough and that pretty much saved her life. Not only that it saved her any other damage too. She had a chest X-ray done and monitored constantly – all good. As the day went on, Jess woke to demand further tubes removed and drinking a cup of juice before going back to sleep. By the evening I was told that we were going to be transferred back to Worthing the following day.

Fabulous news, all going in the right direction. I knew things were good because Jess’s nurse was helping others around but always keeping a close eye on her. The pressure was off her, which was great. She had even managed a little fruit salad to eat and was drinking lots.
After some much needed sleep even for me, as I had been given a room to sleep in, we were going back to Worthing. I would be able to see Jasmine and Molly too. Apart from a little heart stopping moment when I came down in the morning, they had moved her bed to the other side, but as you walked in the first bed you could see was hers and it was empty!! Panic rose, but all was good. She was laying in bed watching Balamory with a big smile on her face. We were transferred early Friday morning, the 4th April and got back about 10am. Never been so happy to see Worthing and the sea.Jess was sat up like lady muck in her stretcher with her Bob the Builder belt on with her plastic fork in hand from her fruit salad and her teddy. Very excited, an adventure, she was in an ambulance. We arrived back on Beach Ward and a few of the nurses on duty the night we arrived were on, they were all pleased to see her and looking so much better too. She lit up when Jasmine came in to see her with her suitcase and her pyjamas. I was quite glad to get a change of clothes too, as I had to buy some t-shirts as had nothing with me.

She had to be isolated until she had had antibiotics for a further 24 hours and they were waiting for the blood culture results to come back. She was having antibiotics 4 times a day in a very high dose, it was doing the trick. Only on basic obs now too. The next day we were told that we could go home, on home leave and she could return daily for antibiotics through her canula and her dose was changed.
Sunday 5th April it snowed really heavy and settling just before we were due at the hospital. I made sure we had an over night bag just in case, but no worries, straight in and out again lovely. Monday was a different story, canula got blocked and failed. We had a nightmare getting a canula in, she has really difficult veins to find and she was having none of it, not amused at being
poked and prodded again. One doctor wanted to give it to her in an injection but because she was on such a high dose they would have to reduce it to do that. But ultimately it was the consultant’s decision. They tried and failed to get a canula in and Jess was not very impressed, so they decided to go for an injection. Jess not very impressed at all now, but better than trying to
get a vein. Nothing had come back on her blood cultures so they were happy for a lower dose of antibiotics. This also meant that the antibiotics had reached her system before the bacteria infected her blood, which explained the very quick recovery or reversal of the condition. On the Tuesday we were discharged. Of course after a last injection and final checks done.
Amazing truly amazing. I am being very careful with her, keeping her out of contact of things she would probably be alright with ie friends little girl going down with chicken pox. Just being precautious as her immune system will be low, will take her a while to build herself back up fully but she is doing really well.
Back to normal, wish I could say the same for me. Think this will take sometime to get over. I truly would not wish that on anybody and for a rash that just looked like a rash. Not the red purple rash that all the books tell you about and to be aware of. If you’re not sure or even if you are, get it checked out. I am so glad I did. I have since spoken to my G.P who phoned to check on Jess and offer us their support now she was discharged. She said that her and the other doctor that saw her did not think that was what it was. It just goes to show that you can never be too careful. There are a few different types of Meningitis, of different strains and with different symptoms. Meningococcal is the worst strain. There are several Meningitis websites with lots of information.
Google ‘Meningitis’ and they will come up. I have since looked and made my self more aware but the other side to Jess’s story is too scary. She is such a lucky girl and that is by acting fast and getting it early and dealing with it as scary as that was.
Right I have gone on enough and I am sure you are bored to tears if you’re still reading that is! I think I wrote this more to help me (it was a lot harder than I thought it would be) but to help others understand. If it helps one person then all good. If anybody does at anytime need to talk about Meningococcal/Meningitis I will be happy to see if I can help in anyway.Symptoms in babies and infants may include:

  • high temperature, fever (possibly with cold hands and feet),
  • vomiting and refusing feeds,
  • high pitched moaning or whimpering cry,
  • blank staring expression,
  • pale itchy complexion,
  • floppiness,
  • dislike of being handled,
  • fretful,
  • neck retraction with arching of back,
  • convulsions,
  • lethargic and difficult to wake, and
  • tense or bulging fontanelle (soft spot on head).

A recent study by The Meningitis Research Foundation has found that the key early warning signs of meningitis in children (under 17 years old) often include:

  • cold hands and feet,
  • leg pains, and
  • pale and blotchy skin.

These symptoms can appear hours before such symptoms as sensitivity to bright light and a rash. If you suspect your child has meningitis do not wait for a rash to appear but seek medical advice immediately.
If there is a rash, the glass (tumbler) test can be used to determine if it might indicate septicaemia (blood poisoning). Press the side of a clear drinking glass onto the rash or bruises and check that they fade. If they do not fade, you should suspect septicaemia. In a small number of cases the rash may fade at first but may later change into one that does not fade.

Taken from http://www.nhsdirect.nhs.uk/

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A Web developer by day and a hagard Dad to twins in the evenings :-)