Eloise Carter's story

Eloise contracted meningococcal B septicaemia in April 2014, one month after the new MenB vaccine had been recommended for use in the UK.

Eloise's first symptom was a headache. She had never complained of a headache before. It was a warm sunny day and we were in the garden. At first I thought a bee had stung Eloise as she was in extreme pain instantly and would not stop holding her head, screaming as anyone would do. I checked her head for a bite/sting then gave her Calpol and let her sleep for 5 hours on my lap after which she woke and asked for a drink, said her head was hurting and went back to sleep. 

Shortly afterwards I woke her and gave her more Calpol. I took her up to bed, putting her in my bed and staying with her, reading a book while she slept. Eloise spent the night tossing and turning, complaining of her headache. Her temperature was a little high but nothing too concerning. In the early hours of the morning Eloise was sick twice and I thought it was a bug.

During the day I brought her downstairs and we watched some DVDs, I gave her more Calpol and she went back to sleep. I made myself a cuppa and ran upstairs to get her some fresh pyjamas as she had sweated through hers. It was just 9 hours after her first symptom but as I took her pyjamas off to wash her down only then I noticed some bruises under her arms. I thought maybe I had caused them by picking her up when she was sweating, but they seemed to be appearing before my eyes. I was very tired from being up all night and couldn’t believe what I was seeing. 

I got a felt pen and marked them in case I was going crazy, but they kept coming! I retook her temperature which was 42 degrees. I didn’t want to think it was meningitis (it only happens to other kids, right?), but at this point I rushed into the kitchen and brought out the meningitis test kit I'd bought some years early. It contained a list of symptoms and a clear plastic strip which I pressed over the 'bruises' (which were grey in colour, not red/purple) and they remained. I started to feel panic. I called 111 and gave them Eloise's symptoms and they said someone would call back within 5 minutes. I started packing a bag, thinking we would be in A&E for hours! Within minutes they called back and went through Eloise's symptoms again, then asked if she could touch her chin to her chest. NO she could not! I didn’t know that was a sign of meningitis, I knew about the fever, rash and aversion to light.

Eloise was taken straight through to the resuscitation unit, the paediatric consultant was there within minutes and he took one look at Eloise and started shouting instructions to the nurses. Lines were put in both her hands at this point but I still didn’t know what was happening and I was overwhelmed with complete and utter helplessness as there was nothing I could do to help her. Within 20 minutes of arriving at hospital Eloise was on her way for a brain scan, the first of many. This is when the doctor said that he had no doubt Eloise had meningococcal septicaemia and he believed it was MenB. Then I was told that she only had a few hours to live and if need be they would contact family members for me. My world ended! 

Eloise made slow but sure progress over that first hour, then the next, and then I was told every hour was a blessing. But Eloise made improvements every hour. The doctors and nurses assured me that although she was still seriously ill she was fighting. And after the longest 24 hours of my life Eloise opened her eyes asked for vimto, her favourite drink, and I knew then she would be ok, she had to be.

The first few days in hospital were very scary and lonely, I had no information. I knew about meningitis but not the treatment and had lots of questions. What if the treatment stopped working? What happens now? What about long term, how will she be? I needed to plan how to help my daughter. That was when I googled and found the Meningitis Research Foundation. I made contact via email at 3.30am and a few hours later I got a call from a lovely lady who listened through my tears and sobs and then explained what would be happening and why Eloise was swelling and turning purple. I was filled with information and ready for the doctor to walk in. The very next day I received all the information I needed including My Guide and Journal which was and still is invaluable, I take it everywhere. 

Eloise improved every day, shocking the doctors. She slept a lot, sometimes 22 hours a day. She slept like this for weeks then started spending more time awake. Eloise had to learn to walk again and despite the pain she did so without complaint and was soon making small trips to the play room, was carried back to nap for a few hours before wanting to make the trip again. Eloise had also forgotten most of her words. The books we once read, the ones where she would finish the sentences, she had no memory of. All her colours, objects that she knew the words for, had to be slowly learnt again. After we returned home, visited by community nurses twice a day, Eloise's behaviour became unbearable: screaming, not allowing anyone near me or in the same room with us, and she had the worst night terrors I've seen and I have 4 kids! 

During all of this there has been very little understanding from others. I've lost friends (they thought they could catch it from us!). I've had people come up to me in the street and pass comment that I'm a bad mother, that I should have had her vaccinated (she’s had all her routine vaccines), that I shouldn’t have let her play in the garden! People sometimes still do cross the road once they see me and Eloise coming or leave the park or library. I've even been spat on! People's lack of education about meningitis is shocking. Even my place of work had little understanding. I had rung in and explained what was happening and arranged unpaid leave, but they still rang, even when Eloise was in ICU, for me to cover shifts, saying I could leave Eloise in the hands of the nurses as it was their job! This happened so many times that I stopped answering my phone in the end and I was disciplined for taking time off.

If Eloise going through this wasn’t enough, I found myself having to explain over and over again that you cannot catch it from her! So far I've given out over 200 leaflets and symptoms cards, and I’ve arranged talks at play groups to allow parents the opportunity to ask question about Eloise. I recently started having monthly cake sales to raise funds and awareness and have plans for more fundraising in the New Year. 

This experience stays with families for life, it never goes away. Yes we have moved on but it can't be forgotten. I feel the constant need to make people aware and to stop it happening to another family. Eloise was extremely lucky. Doctors told me if Eloise had arrived at hospital just one hour later she would not be here today. Thirty minutes made the difference between Eloise keeping and losing her limbs. When you think what you can do in these times it's nothing and it still upsets me to think about Eloise's first follow up appointment with the consultant. He said she was nothing short of a miracle and called the other consultant and doctor who treated Eloise in to see her. None of them could believe this was the same child who came to them so very ill, they were truly shocked at her progress in such a short space of time. I will be eternally grateful to the consultants, doctors and nurses at the hospital who saved my child's life and no thanks can ever be enough for them.

Christine Carter
December 2014